Knowledge is Power #undiagnosed #UCD #dylansstory

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 this! (& remarkably can drive a car!!)


I had absolutely no idea we were not alone. 6000 children are born in the UK every year with a genetic condition that cannot be diagnosed because it is so rare. As a parent of a SWAN, life can seem lonely and you can feel isolated, forever seeking answers to endless questions.

In order to raise awareness for the many children, like Dylan, who are living with an undiagnosed syndrome, I decided to take ‘Dylan’s Story’ public. Undiagnosed Children’s Day (UCD) is huge annual event so we rely on as much media coverage as possible to raise awareness. In 2015 ITV News were looking for an undiagnosed child at GOSH and Dylan was selected to feature in their following day’s programme whilst having his Heart Echo. Blink and you’d miss us. Hours of filming and numerous interviews condensed into ten seconds. I was so proud to have been part of UCD and for introducing Dylan to the world.

Later that week, prior to UCD15, Lauren Roberts (National Coordinator, SWAN UK) published a post on social media searching for a family to share their story live on the BBc’s Victoria Derbyshire Show the very next morning. Without hesitation I volunteered. Quick DIY spray tan, sleep in rollers and, voila, we were ready for our 6am pick up. Traffic was horrendous as we nipped in and out of bus lanes in the taxi. We arrived with only seconds to spare, whisked into hair and makeup, had a very brief introduction to Victoria, then we were live on her sofa. I hadn’t rehearsed; it all just came from the heart. Being interviewed about living with an undiagnosed child could be my subject on Mastermind.


Knowing people were watching and receiving their support encouraged me to continue raising awareness. ‘Dylan’s Story’ was born.


As a result of my subsequent blog and Dylan’s Social Media, I was contacted by journalists wanting me to share our story. We appeared in several publications including; the Radio Times, What’s on TV, Channel 5 News, local newspapers (Brentwood Gazette and Epping Forest Guardian),


Articles for GOSH (Patient, Donors and Staff) Magazines,


We featured (stared 🌟 haha!) on BBC’s DIY SOS for GOSH when they renovated a beautiful rooftop garden. To be asked to be part of DIY SOS at Great Ormond Street is such an honour albeit bitter sweet, for Dylan has been a patient all of his life. Dylan had great fun filming though and kept Presenter Nick Knowles and his team on their toes!!


We even appeared on a South American Breakfast show.
Social media has a huge impact on society and even the celebs love to partake! Because of the way society works, Dylan has gained a superfan who we are in ore of. A truly wonderful inspirational lady. Katie Piper we 💖 you.


We live each day making memories and we have made some beautiful memories whilst raising awareness.


We were literally raising awareness across the globe. The more exposure, the wider the audience. My mission is to spread the word #undiagnosed. No one knows what the future will hold for Dylan, but no one knows what the future holds for any of us. Dylan is an inspiration who continually reminds us what is truly important in life. Dylan has created an incredible bond in our family making us who we are: strong independent parents who take what’s thrown at us and make a life out of it.


In today’s age of tablets and smartphones, it is incredibly easy to communicate your story with the world. I urge you, if you have a message you want to spread, publish blogs/ vlogs, and create Facebook/ Twitter accounts. You will be amazed how much support you will receive and, what’s more, learn you really are not alone.


Undiagnosed Children’s Day is a nationwide event on Friday 28 April 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.

Last year fundraisers, schools, families, companies and donations raised a (approx) £20,000! With your help this year we can take it beyond this figure. To donate TEXT SWAN11 £3
(or any amount up to £10) to 70070 #undiagnosed

Dylan is also fundraising with an outstanding event.  Bigger and better than last years later this year. I am so exited I just can’t wait, and (all being well!) I will have 2 working legs this time to be able to join in. Raising funds for Dylan’s indoor and outdoor sensory rooms. To donate TEXT DYLS65 £2, £5 or £10 to 70070 #dylansstory

Raising awareness is just as important, if not more so than raising funds. Knowledge is power. Please spread the word (& donate a pound or 2 to both amazing causes. Please! 😘)

(I’ll get by) With a little help from my friends 👭👭👭


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; 


Firstly my fabulous friend Karen; we turned an idea we had on a crazy phone conversation into this monstrosity

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’!


Huge huge congrats to you and Jodie on your upcoming wedding. 

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. 


Danielle Armstrong and Debbie Douglas; glamorous TOWIE stars thank you for your support on Sunday. 


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. 


Harold Black; our honouree Dylan’s Story photographer I am so excited to see the professional photos & thanks to his wife Marian who did not stop pacing the field all day. 

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’

The amazing Stage One Theatre group and their Jack and the Beanstalk characters (book your tickets for their fabulous Christmas Panto here Jack & the Beanstalk

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. 
The Dylanette’s 



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. 


So it appears after realising what everyone else has been doing you may think I have literally sat down with my feet up for months! Which indeed I have!! (Not for choice) 


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

🎼Like a small boat on the ocean🎼 

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’ 

to 

‘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??? 


So the real question is when do we say enough is enough?? 

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 

(Channel) FIVE⭐️STAR

  

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; DylanUndiagnosed 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’ & a ‘Special Needs Mummy’ 🛍

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

Don’t Worry be Happy 😃😃😃

  

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. 

Please show you’re support in what ever way you can. 
  

Lucky Star 🌟⭐️🌟

It’s has just hit me as to why I haven’t been able to blog as frequently of late. 
  

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 I should be able to take a breath and relax surely??? 

  
It approximately works out that’s he’s been put under for something or another at least once every two months of his existence. Wow. That’s a lot of sleep this child’s had (hehehe!!) 

So what I think I’m getting at is that it’s now boring…… Is that a correct thing to say?? 

 
We’re back to regular routine consultant appointments….

  • 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 💙💙