Before Dylan, a SWAN was a large aquatic bird. I had never heard of a genetic syndrome as being undiagnosed. Before finding SWAN UK (Syndrome without a name) I’ve since found out a SWAN looks like… More
Wow Wow Wow, I am dizzy from the excitement of Sunday. I am overwhelmed with the funds we have raised, I am touched with the amount of people who came to support us. Friends I haven’t seen since primary school came to show their support, one school friend even cut her family mini-break short to be at our event.
Sunday wouldn’t have been possible without the help of so many people;
You have dedicated your time 24/7 to Dylan’s story, stuck in your office on cold nights and hot days. Working non stop. You are an incredible friend and an incredible person.
Harry; all this materialised by a sheer chain of coincidences. Wow. What you have donated to Dylan’s story goes above and beyond the call of duty. There’s not many people out there who would take a family of strangers under their wing and work solid along with their gorgeous family to help raise money for my little boy. The Howard’s, an incredible, selfless family helping others out of the kindness of their hearts. You are lucky if you come across people like this once in a lifetime. A true gentleman and a true friend.
Jimmy & Chrissy; a quick phone call from Sonia and you jumped on board the Dylan’s story train. Knowing nothing about us other than we are a friend of your daughters friend. Offering your time, welcoming us into your life. Introducing us to the Abridge committee and becoming our friend. You really did drive this to being what it became.
When Karen and I walked into the Bar on that Tuesday night we couldn’t have anticipated what was in store. Bev, Danny, Steve, John, John, John and the rest of the Abridge committee. You welcomed us into your village and into your hearts you have given up your own time to help us and how you all worked on the day was spectacular. A group of incredible people. Dylan’s Fun Day had the most prestigious venue we are so lucky to have had everyone of you on board.
Katie Piper the most inspirational woman I can proudly say ‘ I know ‘ wanting to be part of our special day after following Dylan’s Story. Generously giving up your Sunday so you and your daughter could be part of our day. Becoming an honouree ‘Dylanette’ you rocked that T shirt and worked as an amazing team with DJ Guy drawing our grand raffle.
DJ Guy Powers; what did you say that for??? Offering to assist at a charity event when chatting at the end of a party we hired you for in March after you were touched by Dylan’s story. Little did you know what I had up my sleeve!! In the process you have become our friend. You are quite possibly the kindest, loveliest man (too slushy???) there is. You gave up a whole working day to be part of Dylan’s fun day and wow did you do an amazing job. Everyone has said how spectacular you are. I hope everyone whose booking a party for their kids this year book Krazy Kids Disco. You really are a fabulous ‘Guy’!
My lovely friend and footballer Josh Wright. Thank you for your support in the lead up and on the day. I heard the winner of your signed football shirt was very chuffed to win it.
Jessica Wright for your support on the day and for your donation to our raffle, a stunning black evening dress from your With Love Jessica range.
Robert & Alex only the best Printing Company around! From responding to my email which most people just ignored, printing our logo, printing our T-shirts, keeping up with my ever increasing demands even though you were hugely busy with your own orders and making my Dylanettes stand out in the huge crowd which there was on Sunday. We will definitely keep in touch and get together very soon.
To The Tree of Hope; without having a registered charity number we wouldn’t have been able to raise anywhere near what we have, we wouldn’t have been donated such prestigious raffle and tombola prizes. Having you behind us is an unbelievable achievement.
To those of you who came along 9am on a Sunday morning to assist in our set up; Dan Payne! Lee Neary! Jonathan Yarlett & the cream-cheese bagels!, Katie Maidment & Hollie, Laura Nygate, Emma Goldman, Harrison Myers, Debbie Shepherd, Abi Shepherd & Ziggy & Ross Barrington; transforming the Abridge field.
Through the day people were helping without me even knowing; my brother Uncle Elvis; modelling a designer high vis vest almost single handedly controlled thousands of cars going in and out of the car park, Lloyd Nygate your vocation in life has been fulfilled – a fairground assistant! Richard Saunders and Darren Kantor who too rocked the high vis vest! Rachel Kellinger & Steve for your assistance on the stalls, Paul & Danny O’Hare for arranging the most competitive stall on the day – Speed Shooter (can we book you for our next event??) & thank you to anyone else I may not have mentioned.
Cousins Adam Myers & Debbie Allen bonded for life through the exchange of a Kidney worked together on Dylan’s Keepy Uppy stall even charging people to talk to them. They are most definitely the ‘Dream-Team’
Jimmy Ray and the Lovely Elain Gilby for entertaining the crowds with their stunning voices.
Leigh Young, the only person who I will give two mentions to in this blog. ‘The Don’ ‘The Bank Manager‘ and the ‘Bar Man‘. It probably was the biggest birthday party anyone in Essex has ever had!!
Lou Karamanlis; what a job you had to do, many would want to do it just to cause pain to the Myers Bro’s (The new Mitchell Bro’s) and many watched in pure amusement at the agony they were in. Paul Myers, it’s lucky you weren’t too busy on Sunday to knock down a few pints to numb your pain. Thank you for assisting your brother raise almost £3000 to help your gorgeous nephew Dylan.
Our Sponsors Elliot Leigh Property Management Ltd thank you for starting off our fundraising and being a huge part of our event. Thank you Leigh & Eliiot
Glyn Hopkins your cars looked so prestigious on the field on Sunday. We are so grateful to have had you as our sponsor too. Thank you Fraser
Uncle Gresh whom I gave the task of creating our logo and what he came back with first time was perfect. He created a child like professional logo which incorporated a swan & therefore the brand ‘Dylan’s Story’ was born
As we are nearing the end of this extrodonary list of thank you’s there’s a group of people I simply couldn’t have done it without. My friends some I’ve known for over 30 years and some for only a short while. But these girls are a huge part in my life and am so lucky and grateful to have them.
Debra Yarlett, friend for over 25 years who I can go months without speaking to but when we do catch up its like to was only yesterday we spoke.
Jaclyn Dunne, from the first day at Secondary school aged 11 we became good friends, been at each other’s wedding and there through thick and thin. We went to see Take That aged 15 and still going to see them in our (late) 30’s
Nikki Tyler BFF’s like our girls would say for over 18 years. We have taken on the roles of surrogate mothers to each other’s daughters & can talk about endless rubbish for hours on end as long as we have coffee and cake!
Sonia Farrow; it may have only been this time last year that we met but it feels so much longer. I am so happy that you chose to move your children to Scarlett’s school. I know this is a true friendship which will last the duration.
Sophie Horton, you was working as a waitress in a cocktail bar, when I met you 😂😂😂 and here we are 22 years later. Through good times and bad times we’ve stuck together. My bridesmaid and true friend.
Tara Williams my other bridesmaid, what can I say my darling. Since the first day of primary school aged 4, 35 years of true friendship. There’s been highs and some rotten lows but we are always there for each other like sisters.
Natasha Saleem and Nadene Stevenson like two angels appeared to help us out of the kindness of your hearts. It’s been an absolute pleasure meeting you Nadene and getting to know you better Tash. Thank you.
I’m nearing the end for those who haven’t dropped off to the land of zzzz’s
My family, mum, dad, Fran & John, brothers & wives, partners, nieces and nephews. Life changed for you all the day we found out Dylan was a poorly child. I know it took a while to accept that’s he isn’t your conventional grandson. A unique, one off, one in a billion child who I know not one of you could love any more if you tried. All the Nana’s and papa’s, Richard, Scarlett & I couldn’t get through each day without your love and support.
Richard my rock, by coming home from work early so I can fly back and forth to meetings, to being ignored when you are home because I’m constantly working on the computer or doing paper work. I simply couldn’t have done any of this without you. I’m sorry dinners have been rubbish I guess now I best get back to my place – the kitchen!! I really hope you are proud of what I have achieved for our baby boy.
Little Miss Scarlett for putting up with mummy being so distracted for so many months, you’re ideas have been inspirational you have such a clever head on your little shoulders and are truly the best Dylanette there is.
Seriously though, all the blood, sweat tears and broken bones have been worth it.
Thank you to everyone who has helped, donated, sponsored and came along to support us. Sunday wouldn’t have happened without every single one of you.
I sincerely hope I haven’t forgotten anyone but if I have (I blame the morphine I’m on after my operation!) I thank you all from the bottom of my heart.
I feel very lucky and honoured to be surrounded by such amazing and wonderful people.
Finally, and by no mean least. The star of the show. Whom it’s all been about. The person who has aged me terribly but makes me smile every single day. The love of everyone’s life Dylan.
Tomorrow isn’t promised so please cherish every day. Life is a precious roller coaster. We take the ups with the downs and get right back up again.
If you haven’t donated yet. There’s still time via Tree of Hope / Dylan’s Story and please keep linking and sharing Dylan’s Facebook page
Slow down people would tell me, take a break they’d say……
So we booked a fabulous family holiday to Marbella we were so looking forward to some well earned and precious family time in the sunshine, by the sea, on the sand, laughing & joking……. After the sudden health deterioration Dylan had suffered of late.
Surely this was the break people were suggesting and the one we were anticipating??
But 48 hours prior to our flight I got a break.
Six breaks in fact.
In my fibula, tibia, bloody smhmiba!!!!!
Not the break we had planned.
A huge fear of mine is breaking a bone. For I am the main carer of our almost six year old little boy, this little boy whose needs are that of a baby (& some). Our little boy whose life is so precious as well as being limited and far too medically complex for doctors to fix!
So last Friday on way to do our last bits in prep for Marbs, Dylan and I took an almighty tumble down the stairs, whilst protecting him with my life, even the baby stair-gate didn’t stop our fall as we crashed straight through it bringing it off the wall and to the floor with Dylan and I.
I heard the crumble and crack in my leg and the thump as we hit the ground. The pain was immense and we were both crying. Initially I was so happy I could hear Dylan’s cry as I knew he was alive. Then I was hysterical that I couldn’t move my body to get to him. I dragged myself to the front door to open in hope someone would hear and come to our rescue.
Alone in this position with a non verbal child; what the hell was I to do??? Now the clue in actually in the title ‘mobile phone‘ and this, thank the Lord I had to hand.
After calling hubby and mummy screaming for help everyone headed to our rescue hubby flew down the motorway, my parents, my in-laws and my gorg friend Sonia along with the nee-nor of a blue flashing ambulance filled with 3 very patient & kind paramedics.
Sonia was first through the door who joined in with our crying, I needed her to check Dylan was unharmed as now I was flat out on floor in the most immense pain I’ve ever felt. Dylan was fine. I honesty do not know how, but once fed potato waffles and an orange Fruit Shoot he soon calmed down.
Long story short; the NHS were superb, the operation went smoothly albeit I was awake for the whole two hour long surgery but am now on the long road to recovery.
So instead of laying on a sun bed in Marbs i ended laying on a bed somewhere just as hot but not as glam – PAH hospital in Harlow!
So, I now I am a temporarily disabled person caring for my disabled son, and am the not-so-proud owner of lots of mobility aids including a wheelchair and a Zimmer frame.
Having your independence taken away from under your feet (excuse the pun) is horrid.
But I am truly thankful and touched by all the love and support I have received. My amazing supportive caring and loving husband, I am so so lucky to have my wonderful parents and in-laws who have all gone above and beyond the call of duty looking after me and my babies and of course my fabulous friends – ‘The Dylanettes‘ who have been put on a rota basis for caring for us, making endless cups of tea and being my personal hairdressers.
So the break I’ve had this year wasn’t the one I had in mind……………
I have been hit by writers block once again with so much going on in my life recently to know exactly what to blog about and where to start is a headache in its self.
Hearing Dylan belly laugh for the first time in almost a month is the only inspiration I need…..
From losing his independence because of a nasty arthritis flare up, to having multiple virus’s leaving him lethargic and lifeless, to now hearing him laugh makes me feel all warm and gooey, the love I have for this helpless child is indescribable.
So the hot question I have spinning around my head is ……
” Why the hell do we keep putting him through all these (unnecessary) intrusive procedures ?? “
For every General Anaesthetic attacks his already compromised immune system, leaving him prone to more illnesses. Meaning his already compromised life expectancy is at risk.
Having so many underlying illnesses means every time he’s attacked by a virus or an infection all of Dylan’s problems decide to rear their ugly little heads and upset my boy and us all.
And for what????
Every parent of an undiagnosed child can almost certainly guess the outcome of these investigations we put our poor innocent children through.
” Unfortunately Mr & Mrs Dylan’s parents the results of the recent test show nothing’s wrong “
Hmmmm obviously there is something wrong for my beautiful little boy, who is approaching his biggest mile-stone to date, his 6th birthday, is stuck in the body and mind of a baby.
Yes he has 10 perfect fingers and 10 perfect little toes but he also has more than
- 20 horrid diagnosis,
- Is under 15 different teams at Great Ormond Street Hospital
- Has 4 different Clinical Nurse Specialists,
- Is on 15 different daily drugs,
- Has 1 weekly subcutaneous (chemotherapy) injection,
- and 1 weekly infusion
all that’s missing is his Partridge in a Pear Tree – his overall genetic diagnosis.
So yes something is obviously bloody wrong.
Every suggested investigation brings so many emotions.
At the beginning we thought
‘we shall put him through this xxx procedure as it will give us the answers we are seeking’
To the next investigation:
‘the last test was wrong now we will get our the answers we are looking forward’
‘the last 20 tests couldn’t have been performed correctly at least now we will get out answers’
to now, after more than 50 different investigations my left and right side of my brain have its own conversation;
(left side of brain pipes up) ‘is there any point putting him through all this again to not get any answers’
(Right side of brain debates) ‘but this might be the test to answer our prayers’
In the mean time if Dylan spends a whole month, following one of these procedures with his health deteriorating and being rushed back and forth to A&E is any of it actually worth it???
It’s not giving up is it??
It’s just letting Dylan live with his Undiagnosed Condition for as long as he’s able to and continue to let him belly laugh over the silly little things that make him the happy little chappy he is.
But please, do not judge me when you read on Facebook later this year that Dylan is undergoing yet another (pointless) investigation. As you never know, “dreams can come true”
But in the mean time I’ve dedicated Rachel Platten’s fight song to the strongest fighter I know….. Cause I’ve still got a lot of fight left in me 💙
Please don’t forget to support us in anyway you can – September 11th, put it in your diary now for its Dylan’s Fabulous Fun Day It is going to be a spectacular day. Fundraising via the Tree of Hope to help make Dylan’s life simpler. If you are able to donate as little as £1 Dylan would be incredibly grateful. Please click on link above or TEXT DYLS65 to 70070
Until next time.
Dylan’s Mummy xx
I thought I’d very quickly squeeze a third ickle Undiagnosed Children’s Day blog in just in time for ‘the big day’
A lot of you have seen on mine and Dylan’s Facebook pages our interview which aired this evening on channel 5 news. In case you popped off to Venus or perhaps Mars this afternoon you can catch it here. Dylan on The News
It’s a Bitter Sweet experience, as I would be a liar if I said we didn’t enjoy our ‘five minutes of fame’ ‘Lights, Camera, Action’ but the serious reasons behind why we are being showcased on national news is very bitter. For our beautiful, amazing little fighter does have an Undiagnosed life-limiting condition.
Apart from the fact it looks like this particular camera has added 10 stone, not just 10 pounds, my gorgeous new very high nude designer shoes didn’t make the cut and I obviously had too much hairspray which did the reverse and made my hair look sticky up not sticky down (and yes I am very self critical) oh and rein-acting Goldilocks and the three bears on the teeny weeny little chairs which being brutally honest felt more like sitting on a loo – I DID IT (shouty capitals) confidently, eloquently and just getting our story out there.
Dylan is our Peter Pan!!!!!!
So with a really poorly little girl (who should have been home in bed) and a tired little boy we set off to our favourite place SNAP Charity where they kindly let us use their amazing premises to film. Thank you so much SNAP, we ❤️ you.
The gorgeous Lauren from SWAN came along to support me (I think she really just wanted to spend a couple of days in Essex) she even got to visit the SugarHut! And promised next time she visits to get the ‘right shade of orange‘ fake tan, just like me lol!! There’s an Essex girl in there shouting to get out!!
The C5 News reporter and cameraman were fantastic. Immediately understood just how much Dylan could take of the filming and knew just the right time when to cut so ‘the star of the show‘ ⭐️ could have a ‘Robinsons Orange Fruit Shoot‘ break!
So me, as my normal ‘cold as ice‘ self chatted for the best part of the three hours we were interviewed and filmed for. Showing no emotion, even when the cameraman welled up. Babbling on about my favourite subjects; Dylan, Undiagnosed and SWAN…..
Dylan and Scarlett were absolutely amazing and both made me immensely proud of how well behaved they were and how they both took to the camera like a ‘SWAN to water‘ #proudmamma
The love my children have for each other could melt Arendelle on a bad Elsa day! She is he’s tonic and he drives her mad. #perfection
Tomorrow is Children’s Day and raising awareness for Dylan and the thousands of children born each year with an Undiagnosed Genetic condition is massively important to me.
There are loads of awareness days throughout the year, every day someone is raising money for one cause or another but if you kind people reading my blog could dig really deep and spare £1 it would help SWAN UK and all of our little SWAN‘s.
To donate click here Just Giving SWAN or TEXT SWAN11 £3 (or however much you would like to give up to £10) to 70070
I will leave you on that note to squeeze your babies tightly. Being Dylan’s ambassador is tiring work 😴
Confessions of a Shopaholic, oops that’s another story, I mean Confessions of a Special Needs (SWAN) Mummy….
(Hubby, please bypass this paragraph it is not for your eyes 👀). Well if I am honest having a Special Needs Child and being a Shopaholic seem to go hand-in-hand for me, for if Dylan is having a good day, to celebrate, I shop 🛍 and if Dylan is having a bad day, to compensate, I shop 🛍. The fact is I shop full stop 🛍🛍 and the fact that I can do it in person in a shop, online at home or on the go from my smart phone at the hospital is just a bonus 🛍 😉🛍 24/7! Fact shopping is therapy.
One of the ‘greatest’ things about being a ‘Special Needs Mummy’ is that it has taught me to become the person I am today. A Selfless, dedicated and hardworking mum who values every single moment of every single day.
Life is a gift but Dylan is the biggest gift *albeit in the smallest of packaging with no label!
I’ve heard so many cliché statements over the years I thought I’d share with you my ‘Top Five’ I am sure other Mum’s! (Parents!) of Special children can relate to this…..
- ONE: Special Needs Mums are always asked “How do you cope?? I couldn’t……” 😩
Firstly yes you would!! You would have to, just like I have to. There’s very little choice in the matter. You may think I go above and beyond the call of duty for my special little boy but I only do what is needed to keep him well, happy and here.
Anyone that says they couldn’t cope obviously doesn’t have to.
I often hear….
“I haven’t slept because my child was (delete as appropriate) teething/being sick/has a cold” (etc. etc.) In fairness if I was to only have one interrupted sleep, I’d feel rotten the following day too. But the reality is I haven’t had a full nights sleep in almost six years……. It’s normal in our unconventional lives
- TWO: Special Needs Mums are always told
“You need to look after yourself, you need to be well to look after your child……” 🤒
Never had a true word been said, and in theory a walk through the park but in reality it’s a marathon and there really isn’t enough hours in the day to put yourself first. For when the 24 hours in a day are dedicated to caring for your sick child, us mums tend to slip on to the back burn. *tends to be a slight juggle when a Special Needs Mum has her own health problems.
We would all love a weekend trip to a Spa once a month or even once a year (*once a decade or even once in a lifetime would be more like it!!) but our kiddies come first. Period!!
- THREE: Special Needs mums are always asked about………. Siblings and “How does ‘she’ cope??” 🤔
As a parent you want to give equal attention to all of your children. In my case two. But when you are blessed with one ‘Special‘ one and one equally as special but her needs are purely of wanting sole mummy attention, this can be hard (*back to my juggling act). As a Special a needs mummy when their non special needs child is a capable, clever and intelligent ten year old you expect them to do a lot of mondaying tasks but when you realise the tasks in hand are to pass the oxygen and help comfort sibling following watching mummy give home injections, the tasks are not too mondaying after all. It does feel like there is never enough of my attention to go around. No matter how many trips to ‘Smiggle‘ we do!! On the plus side she gets unlimited iPad time whilst I’m on phone to endless Doctors, Nurses and Therapists!!
- FOUR: Special Needs mums would have been asked along their journey
“If he doesn’t talk, does he sign” NO! “How do you communicate with him??” 🙄
Communication, or lack of it in our case is starting to get frustrating. Frustrating for our son who at nearly six years old is still babbling the same six sounds he’s been saying for almost four years. Cognitively, not able to sign, yet fully aware of what he would like to ask for. He finds other ways of asking, pointing, grunting, crying, changing tones in his voice, laughing when we get it right and pushing away if we get it wrong. Frustrating for us when when we don’t get it correct first time.
People automatically assume communication by speech is natural, and generally it is. But in our home it’s not so we have to find our own way to communicate.
Special Needs Mums have to learn to understand their non-verbal children. It’s just another part of the job!
- FIVE: This one only us SWAN Special Needs Mums will have heard……
- “What do you mean ‘he’s’ Undiagnosed??”
- “When will ‘he’ be Diagnosed??”
- “How does it make you feel ‘him’ being Undiagnosed??”
And only a SWAN mummy can answer……. 😳
Without a diagnosis life can be very isolating. Families often feel like they don’t ‘fit in’ and without a diagnosis it can be very difficult to answer questions about their child. They don’t know what the future holds for their child – Will they walk? Talk? What will their life expectancy be?
It’s been a long journey for us a family coming to terms with Dylan not having a diagnosis. I’ve been through lots of grieving stages for the child Dylan isn’t.
- Denial, he will get better, it’s just a blip, the doctors don’t know what they are talking about (all of them!)
- Anger, why me, why Dylan, why us, it’s not fair (*throws dolls out of pram)
- Depression, fed up, can’t carry on, peers all continuing in their ‘normal’ path whilst Dylan is stuck in the mind and body of a baby.
- Acceptance, realising we have been blessed with ‘THE MOST’ amazing little boy, one who is unique, a tough little fighter, who is incredibly handsome, very determined, extremely long and happy, a little boy who just takes whatever life throws at him with a pinch of salt. Accepting we are the luckiest parents alive to have been sent this little angel who has make us the strong loving parents we are today. Realising Dylan puts the ‘Special’ in ‘Special Needs’.
Did you know six thousand children are born each year with an Undiagnosed Genetic Syndrome. Undiagnosed Children are known as SWAN’s. (Syndrome Without A Name)
SWAN is a term used to describe disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify.
SWAN is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.
SWAN is a lifeline to hundreds of families like ours. To raise awareness for Undiagnosed children, like Dylan, this Friday, 29th April is Undiagnosed Children’s Day. It is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.
So after almost six years of Why, What, How questions we are retired to the fact that Dylan may never get a diagnosis. Even if he was diagnosed it wouldn’t change the daily care Dylan requires. It would be so rare & wouldn’t make Dylan better or change his life expectancy but it may help others in the future which is why we will continue with Genetic studies.
And so he writes the story #dylansstory
Follow us on Facebook Dylan’s Story
Any parent who has a child who is medically complex means business!
They should have a sign around the neck saying ‘DO NOT MESS! (Especially before our first infusion of the day of caffeine!!) This includes the endless doctors, nurses and health professionals involved in their care that think they might know our children. Without any letters after our names we are more qualified than most of them.
Now please don’t get me wrong, not only could my Dylan not live without their care and input and I couldn’t perform any surgery as they can (although I would happily give it a try), I am simply saying until you have the job, like us caring for your children who are 100000% dependant on you 24 hours a day 7 days a week with no real signs of being able to become any more self sufficient in the future and on the astounding and taxable amount of £0.369642857142857 per hour as a carer, you don’t really know them at all.
Us parents of medically complex children have had to develop a huge sense of humour! Most of the time if we don’t laugh we will cry. That, and a really thick skin. We’ve had to find ‘our‘ main server to switch off our emotions or onto a needs-must basis. Along with appreciating the quality of life and not so much of the material things (oooooooooh always a little room for a designer handbag and sparkly shoes! every girl needs a little pick me up after all!!!)
Welcome to our world!!
Syringes in handbag, clanging bottles of potent meds, subcutaneous injections and butterfly needles on hand, frustrated non-verbal children, endless hospital appointments, non existent sleep patterns, and scarily not wanting to look to far into the future. Who knows what the future may bring?? and all of us SWAN parents with at least 2 million, 300 hundred and 66 unanswered questions. Number One being; ‘what’s wrong with my child?’
Now. Statistics I don’t have but out of the medically complex children in this world there are the ones whom, like Dylan are #undiagnosed. This has added plenty more bumps in our already rocky road *definition = A hindrance in some quest or extended task, As most of these children, like Dylan are serviced from the head to the toes. (See I am humorous ha ha!!)
Getting over 14 different teams, professors and their nurses at Great Ormond Street Hospital all singing from the same hymn sheet is incredibly hard work. This is another part of my job, it’s lucky the salary so good else I’d be on the look out for another one!!!!!
Which is why UCD taking place later this month, on Friday the 29th of April is so very important to us.
Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic conditions and raise funds to support the work of SWAN UK (syndromes without a name) – the only support available in the UK for affected families.
There are lots of ways you can help support the day – why not change your social media profile picture (to this one below) or cover image and if people ask you what your picture is of, just by you telling them raises a little more awareness for both SWAN UK and Dylan’s Story. #undiagnoed #dylansstory
Did you know over 6000 children each year are born with an undiagnosed genetic condition? Before Dylan I had no idea. Nor did I realise it is even possible for someone to be #undiagnosed. This is not always a temporary stage. Families can face a lifetime of not knowing and struggling to access the information, support and services they need for their children. With out a diagnosis these children (and their families) need to be taken seriously. A lot, like Dylan on several genetic studies but because of the rarity still may never get the label they’re so desperately searching for.
Children living with an undiagnosed genetic condition do not fit into any particular boxes. They have no label or title and most have no prognosis no real expectations. SWAN UK is a lifeline to hundreds of families like ours where our children all just seem to fit nicely.
When doctors say they simply can not answer your burning question it leaves your brain frazzled.
What do you mean you don’t know. You must have treated plenty of children just like Dylan???
When we were first told this back on Sky Ward at GOSH when Dylan was just 6 months old we were younger then, much more naive our control was purely in the hands of these professionals whom we looked up to desperately after their help, advise and hope of making our sick little boy better and to put this awful nightmare behind us.
Thinking the next consultant, our second opinion will have our answers, now speedily approaching 6 years old and with almost 50 health professionals under our belts (not including the 100’s we’ve met along the way) still with no answers we’ve retired to the fact we may never ever get our diagnosis. ‘Dylanitis‘ as it was first joked about at GOSH!!
Having a child who is a SWAN can leave parents feeling very isolated, not having anyone to talk to with perhaps an older child to see what the future may hold for our little boy can be a lonely and scary place.
Optimism (and prayers) is the only way forward for I am at the conclusion not one single one of us knows what’s around that corner, the only difference you are able plan ahead in yours and your children’s life. For us we are so grateful for every single day and cherish every moment.
Enjoy today, live tomorrow as it turns into today. Yesterday is a memory to cherish forever.
Being part of the SWAN community has helped me become the strong independent woman I am today. I’ve met some fabulous ladies all traveling the same rocky road as me and some amazing SWAN friends for Dylan. Thank you SWAN UK.
Dylan may or may not get a diagnosis in his lifetime but he will always be a SWAN.
This is why UNDIAGNOSED CHILDREN’S DAY is hugely important to us.
Yesterday on Dolphin Ward whilst seeing Dylan’s paediatrician and discussing Dylan’s ongoing infectious diseases (throat and oesophageal tract infections) it occurred to me that we have no pending procedures under general anaesthetic due any time soon. Normally I’d get told that they’d look down his tubes whilst under GA but seen as Dylan has had almost every intrusive and inquisitive investigations in his almost six year little life there’s practically nothing else that can investigate into at present.
So he needs his tubes looked into, also needs a dental examination both under GA but neither want to be done as a sole procedure. His knee will need operating on approximately at 7 years old we were told, but seen as Dylan’s legs are the length of a 9 month old baby that’s not gonna happen anytime soon
So what I think I’m getting at is that it’s now boring…… Is that a correct thing to say??
- Rheumatology – happy that his inflammation is under control with both his daily steroids and his cytotoxic injections.
- Orthopaedic– can’t operate until he’s older
- Endocrine – can’t help him grow
- Neurology – is flummoxed with the abnormalities they found on his scan last year
- Genetics – starting him on the 100k genome project in May
- Immunology – I’m giving him his regular infusions, but my boys IG levels are still dropping whilst on the drugs
- Cardiology – regular reviews
- Gastro – at a stand still, although his reflux is back with a vengeance
- Respiratory– under review
- Optometrists– he WILL not wear his glasses
- Dental – under review
- Along with 2 dozen therapists, community teams and local teams (all that’s missing is a partridge in a pear tree!!!)
Is it boring that we have no ops pending?? Surely not. NO! This is my time to enjoy my little boy. Dylan ‘Peter Pan’ M.
So I should count myself really really lucky,
- The Past – we’ve been through really tough times, touch and go at times
- The Future – we’ve got tougher times ahead I know
- The Present – we have a happy amazing little boy who simply put, is my baby, he doesn’t sit still, he’s constantly on the go 24/7, he’s obsessed with his car tights and Adidas hoody, he handles pain amazingly, he takes everything that’s thrown at him in his stride, he’s never angry. As long as he’s got his Birdseye Potato Waffles or Mcdonalds chips along with his orange flavoured Fruit Shoot and shock horror a brand new addition to his food regime Teeth and Lip sweeties he’s happy as Larry (who is this Larry??)
In Dylan’s world it’s a happy place. I’d happily swap places and live in Dylan’s world. It seems a lot nicer place than Mummy’s world. He’s a lot happier there than I am in my world.
I am so Lucky as I have Dylan 24/7. We do everything together. He is my world and he makes my world perfect.
So for now I’m going to be thankful of the time we have away from being an in-patient (which has turned into being the norm for us), and enjoy every second of normal life, well normal-ish!?!?
Dylan’s my bowl of #luckycharms 💙💙
Have I lost my mojo or am I just too busy?? Maybe it’s because nothing significant has really happened. I mean….
- Giving infusions has become part of my routine, in fact, meds have been increased as part of his immunity is lower than when he started. Work that one out #mrtopsyturvey
- We’ve had so many consultant and therapy appointments they’ve all kinda rolled into one.
- I’ve had a journalist working with Dylan’s Story but nothing’s gone national. Yet!!
- Our charity is ‘still in process’
- My gorgeous friend ahem I mean P.A is planning a ball in aid of Dylan. #Watchthisspace!!
- The plans for the ‘big build’ are being drawn up….
- Dylan’s fabulous Lead Consultant at GOSH ‘Prof B‘ (who hates any social media or publicity…. Who I will get to talk when we get our diagnosis!! ???) referred us for the 100,000 Genome Project which we have been recruited for #excitingtimes
- Both Dylan and I have been using facilities at Haven House Children’s Hospice again after a few months off. Unfortunately that ‘stigma’ crept in and scared me but I’m over that now!! #welovehavenhouse. Even Dylan’s big sister has been working on a project there which we are all very excited about #Watchthisspace
- I’ve been organising a 10th birthday party and a 70th birthday party
- Also, a SWAN UK meet up for UCD (Undiagnosed Children’s Day) 29th April 2016, raising awareness for this day….
- Oh and I have became a Parent Rep (West Essex) for SWAN UK, a voluntary post offering so many hours a month of my free time. FREE TIME…. What the hell is that???
(It’s a good job part of Dylan’s condition means he doesn’t sleep, look at all the extra hours in the day I get!!)
So I guess this may be the reason I haven’t had the time, umph or energy to finish a blog……….
It’s a good job Mother’s Day is early this year as I am sooooo looking forward to ‘doing nothing’ (after doing Dylan’s infusion of course!!) putting my feet up and being waited on by my gorgeous husband and beautiful daughter. (Watching Dylan make a mess and them clear it up hahahaha who am I kidding) #keepdreamingkid. A fab fun family day with a meal out that I didn’t have to cook will be wonderful. Can’t wait.
Happy mummy’s day to my beautiful mummy and mummy-in-law, my special friend who hasn’t got her mummy with her on mummy’s day, to all my mummy friends and to the amazing mummy’s, like me, who have been blessed with the special ones. 💙💗💙💗
Cuddle them littlens tightly, most of them don’t stay little for ever 💙💙💙
So…….. He’s gonna be small!! Tell me something I don’t know!!! *said in a high pitched squeal
He is small and has been small since I carried him. 83cm small to be precise!
My little dot. My special little man. My bundle of joy. My complete and utter world 🌍
He may be small but he is mighty.
- From day 7 he cried for days and weeks on end (in pain)
- At 2-months old he stunned everyone with his new trick, vacant episodes. But did it bother him?? Did it ‘eck, Bothered us though
- At 5-months old when I thought he’d died in my arms he came back kicking and screaming and as good as new *a trick he does frequently 😱😱
Honestly this child……..
Also at 5-months old, when doctors said he wasn’t strong enough for general anaesthetic at GOSH, he showed everyone who was boss and has since been put under more than 25 times *I have honestly lost count
When he was about 6-months old he had his leg plasteed at GOSH in hope of straightening it, he only went and bent it straight back into its crooked shape right before our eyes *instantly as the plaster was removed.
So you get me???
This child, who, I was told wouldn’t sit up, crawl or walk (we are still waiting for the latter but I know it will come, little steps n all….. Excuse the pun!!) has defied almost all odds against him.
And as for the Neurologist at Addenbrooks who said he’d eat his hat if Dylan ever walked I have a large tasty Sombrero filled with arsenic ready to go….. Well one day. A girl can dream can’t she???
For those who read my blog last year ‘Every Little Thing He Does Is Magic’ *THANK YOU, after our meeting with Dylan’s Endocrinologist at GOSH, may be able to relate to how I am feeling today after our follow up appointment. Please click on link to refresh yourself. Every little thing he does is magic
Today was our first appointment with Dylan’s Endocrinologist since last May, I thought I’d be absolutely fine going it alone. But I bottled it at the last minute so Rich stepped up to the plate, cancelled his work and came with me. Right by my side. My total rock. #iamaluckygirl
We arrived on time for our appointment *shock horror and were seen almost immediately *more shock horror The consultant diplomatically reiterated a lot of what we had already discussed; Dylan’s body produces such a large amount of growth hormones but they just do not work.
Basically in layman’s terms. ‘Dylan’s brain tells his pituitary gland that he’s not growing so it produces even more natural growth hormones. Hundreds of the things. More than me or you have. All of which lay dormant in his little body. Therefore if we went down the hormone replacement therapy road not only would it almost definitely have no effect of Dylan’s growth the side effects would be a given. As a family we have digested the fact that this is just simply not an option for us. #thedrugsdontwork
- Dylan grows on average one and a half centre meters a year.
- Dylan’s remained the same weight for approximately two years
- Dylan is way below any centile line
- Dylan’s genetic make up means he was destined to be small
- If we took Dylan off of all of his toxic medications he may grow a little bit. He may not.
- Dylan is the best gift in a teeny package 💙
So he’s just going to be little. He’s just going to be short. He’s just going to be DYLAN and we wouldn’t have him any other way.
He might have a little body but it’s our little body. But for a little man he definitely has a HUMUNGOUS personality, bags of laughter, lots of quirkiness and a few strange habits *adidas hoodie obsession for one!. He’s little enough to hold in my arms and squeeze with love. He’s little enough to smother in kisses 💋💋💋. He is just perfect. He’s is just Dylan and it’s his story. #dylansstory
Eeek I did it!! *shouts with a sigh of relief. It’s done. It’s over and I am on the train travelling back to Euston to reunite with the 3 loves of my lives 💙💙💗. Without tears (on my part) with a little wobble (on my part) a whole lot of Facetime and all in the name of love ❤️
Separation is desperately hard for me seen as I have never done it, not in Dylan’s lifetime anyway. But when I was asked to attend SWAN UK’s Bloggers Workshop I knew I had to, no, I wanted to go!
Blogging is my tonic 🍷Blogging is my release 🤔 Blogging is my way of sharing the realisation of my world, Dylan’s Story to all you lovelies who take the time to read it and follow our little life adventure 🤗
Firstly, let me tell you how amazingly well my gorgeous husband coped, one full night of no sleep out of the two *he got off lightly, welcome to my world Mr. M!! He even got to take Scarlett shopping, went for a meal with the kids and as exhausted as he says he is, was elated at well how he managed and so was I. *now I know I should be jumping for joy and re-packing my bags but in fact I won’t be doing it again anytime soon so don’t worry mummy’s on her way home! #missedmyfamtoomuch
SWAN UK; Syndrome Without A Name means a whole lot to me. Having a medically complex child with no diagnosis is like having a cheap handbag. #nolabel. Now, I am not comparing Dylan to a Michael Kors Handbag *my other love ❤️👜 I am simply saying it’s hard sometimes not having a label for your goods! And after being so involved in Undiagnosed Children’s Day (UCD) 2015 knew it was so important to get on board and help raise awareness (& funds) for UCD 2016 (29/04)
And boy did I do it…. Staying in Birmingham for two nights! Travelling by tube and train *all by myself #idontdopublictransport #alone
SWAN UK is a small charity which started as an extension of Genetic Alliance which was established in 2011 with a 5-year grant. Today, SWAN UK has its own brand identity and two prestigious corporate organisations who are in partnership raising money to help this charity whom help hundreds of families. But these alone can’t keep a charity afloat. It’s actually not just money we need. ITS AWARENESS.
SWAN UK provide support, shares information and increases awareness and understanding of undiagnosed genetic syndromes For children like Dylan. Because families like ours find it harder to get the help they are entitled to because they do not have a diagnosis *in brief SWAN is fab and do loads for families like us. But sadly 2016 sees the end of the 5-year grant so this is where they need your help.
Yesterday, 13 like-minded, fabulously gorgeous woman, all who write superbly about their own lives with their SWAN/’s and 3 SWAN representatives sat around in a large meetingroom, technology everywhere, with copious amounts of coffee flowing ☕️, yummy pastries 🍩 and even an afternoon pick me up of Prosecco 🍸to discuss how we can make Undiagnosed Children’s Day 2016 more #outthere *in the words of my daughter!
In my opinion *and please don’t get me wrong, each and every charity is as important as the next to the relevant people but some are just more known and publicised than others and if I could I would give to them all… So, back to my opinion, a children’s cancer charity may find it easier to raise money because there is a lot of awareness and publicity around this sensitive subject. If you were asked you to donate £1 of your hard earned money to help a child with cancer almost everyone who could would. Right?? If someone asked you to donate to #HavenHouse a children’s hospice to help a child with a life-limiting condition you would. Right?? But if I asked you to donate £1 to SWAN UK to help an Undiagnosed child like Dylan. Would you?? There is just not as much awareness and understanding in the general public of the importance of SWAN UK, similar to the lack of support there is for some families within the medical profession *not all may I add.
The stigma of childhood cancer or a children’s hospice would possibly have a bigger impact on the general public’s heartstrings. But the reality is Undiagnosed Children need even more help raising funds and raising awareness as many of them, like Dylan are life-limiting, complex, medically challenged, non verbal, non mobile…. You get me know. Right??? *there is a just giving link, which can be found on SWAN UK’s website but I am not asking you for your money at this stage, just to think about where you give your money too **thats not to say I won’t ever be offering you the link to SWAN UK’s just giving page
Did you know (in a survey) 5 of the top 10 words used to describe experience of parenting an undiagnosed child are…..
- Isolated – no other child is like Dylan
- Frustrated – will he walk? will he talk? Will he ever get a diagnosis? Why us?
- Lonely – hours in hospital waiting rooms! Hours in traffic to and from appointments? What feels like hours waiting for your child in recovery.
- Anxious – will he have a seizure today? Will he be poorly today?
- Stressed – do I need to prove an explanation for this *shouts very loudly!
* Swan mummies and daddies have more unanswered questions than parents of children with a diagnosis and some live day to day unsure of the next
So lots of talking and listening and taking notes was done and whilst I would like to continue raising awareness for Dylan’s Story and his undiagnosed genetic condition, I will be coinciding this with raising awareness for Undiagnosed Children’s Day which takes place on the 29th April.
Dylan’s Story has done a little bit of media but if anyone reading this feels they might know someone in the media albeit news, breakfast shows, radio, Nationals, locals….. I am on a mission, please help by forwarding them Dylan’s Story details after all 2016 marks the year of Dylan becoming the 6-year old baby!!
As my train approaches the station and before my feet hit the streets of London Town, to sum up my weekend away,
- I have, with my humungous suitcase got a train to and from Birmingham
- Shared a hotel room with a friend I’ve only met virtually,
- Met 12 other fabulous ladies,
- Had 2 lovely meals out,
- Sat in an 8 hour conference,
- Talked till I lost my voice,
- Had a little bit of ‘me’ time,
- Had not one but two child free sleeps *feel worse for it I must say
- But to top it off, my 3rd favourite man came top in our poll!! #robbiewilliams
So, before I go on my promote, promote, promote mission I’m gonna get off this train, get myself home and squeeze my babies. Mammas a coming for ya x