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’ 


‘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