The ‘P’ Word 

The ‘P‘ word, let’s call it ‘potato‘ 

Isn’t it strange how one simple word can make you quiver 

There’s a few I can think of but one new one has become part of my vocabulary this week. 

PALLIATIVE (care) 

The word yells ‘end of life‘ at me. I’ve only just come to terms with the words ‘life-limiting and life-threatening‘ The words that made my legs crumble beneath me when I heard that and Dylan in one sentence. 

Now, those who follow my blogs may have noticed I’ve been a bit quiet of late. Sometimes words just flow. Other times I’m just like Dylan ‘non-verbal’ I apologise for my distance. 
Firstly I would like to wish you all a very happy & healthy New Year. 

Like every New Year, I think ‘this’ll be our year’ However, (& I really don’t like to talk too soon) we have started each year, 2011 through to 2016 with a poorly little boy (thanks time-hop & Facebook memories for not letting me forget!

Now 2017 (albeit we are only 17 days in) is proving to be a positive one. The most positive by far. For our gorgeous little boy Dylan is doing well, very well in fact. Our generally sick little boy is suddenly full of laughter and giggles, cuddles & naughtiness. He’s happy, fun-loving, cheeky, newly inquisitive, incredibly messy and extremely funny. Oh, and when he wiggles his toes in ‘if you’re happy and you know it‘ I could just eat him up. 


Back to the ‘P‘ word. 

When an appointment came through to see a paediatric consultant from the Palliative care team at GOSH I felt physically sick. This isn’t a general paediatric appointment. Not just anyone can see this type of doctor. 
Now, when he’s doing so well as well. The stigma of the ‘P’ word was making my eyes sting. 


Stigma. I’ve experienced many of these in the six and a half years I’ve been Dylan’s mummy. A couple of years ago when we were referred to a children’s hospice I had the same feeling. 
Children’s Hospice; A nice place for child and family. Nothing else. 

When I googled the ‘P‘ word the definition was far from what I was imaging. In fact what defines the word described exactly what Dylan requires. 


Palliative; To alleviate pain without dealing with the cause of the problem. This I can deal with. This is what Dylan requires. A doctor who specialises in pain management and can tweak Dylan’s pain relief in order to help him. Especially when the worlds renowned stongest drug rarely works. 

The ‘P’ word. A word I am now not scared of. 

The only ‘P‘word I will be using for 2017 is……… Positivity 


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(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

Thats what friends (&family) are for 👭👭👭👭 

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. 


Anyone that knows me knows I do not do a job by half….. So even down to breaking my leg I made sure was done good and proper. 

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…………… 

🎼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 😴