Dylan's Story

Dylan; our incredibly gorgeous little boy...... to most Dylan looks like a 'normal' (what is normal anyway???) 12-18month old but in fact Dylan is 11 YEARS OLD!!  but is stuck in the mind and body of a baby. He is in constant pain yet his specific condition remains unidentified. 

Doctors predicted Dylan wouldn’t make 5 months old..... yet here he is always smiling. As Dylans getting older his complications are getting worse.... so we are constantly needing to adapt for Dylan's every increasing needs. 

Dylan's love for life is incredible for he knows no different. Like most babies he babbles and crawls around, recently he toddles - aided.

No one can make Dylan better. No diagnosis can cure him, so we manage Dylan's day to day care as it comes. To us everyday is a gift.

Meet Dylan; a real life Peter Pan.

Dylan is afflicted with an undiagnosed genetic condition or SWAN (Syndrome Without A Name) which means he suffers from a long list of complex issues. The doctors simply cannot explain Dylan’s condition, other it being Life-Limiting and Life-Threatening. A big worry for our family is that Dylan regularly stops breathing and suffers daily seizures. Our little man is also non-mobile and non-verbal.

One of the main issues Dylan faces is an extremely rare growth and development disorder, meaning despite the fact he is about 10,, he is stuck in the mind and body of baby aged between 9 and 18 months. This is obviously devastating for us as parents, but one big positive is that he is little enough for us to hold him like a baby and give him lots of kisses and cuddles.

Dylan lives in constant pain caused by colitis and severe arthritis. We try to control this with chemotherapy injections which I have to give to him at home. I also administer subcutaneous infusions to treat Dylan’s hugely compromised immune system. Having this immunity problem means our little boy is limited on how freely he can mix with others in the outside world and he has to be home educated. In fact, due to Covid Dylan is isolated completely now away from friends and family. 

This brings me on to why we need your help. Defying all the doctors’ predictions, our little mans needs are now so much more complex. He requires a safe and sterile environment in the home and a range of specialist equipment and home adaptations. This includes building work inside and outside. For example, being immune compromised means it is not possible for Dylan to crawl outside in our garden. I would dearly love to be able to put some astro turf down on which our little man would be able to crawl freely whilst enjoying being out in the fresh air.

Due to the severity of Dylan's conditions I home educate him but I lack the funds to buy much of the specialist equipment needed to do this and unfortunately Essex council do not have it in their budget to fund children whom are home educated on medical grounds.

Although we do not have a time limit on raising these funds, time is so very precious, and it is our goal to make Dylan’s life as long and as comfortable, happy and stimulating for as long as we can. 

Dylan is under 19 different teams at Great Ormond Street, has over 28 individual diagnoses and is on more than 26 medications daily. 

Thank you for reading Dylan’s story. Anything you can give to help our little superstar Dylan would be hugely appreciated.

With love,

Dylan’s Mummy, Daddy and big sister Scarlett

Tree of Hope reserves to use these funds for any purpose stated in the parents charter, including but not limited to, medical treatment, surgery and therapies and related travel expenses, medical and exercise equipment, childcare, home adaptations and the cost of vehicles designed for the disabled

Request Removal

Request a callback

Fields marked with an * are required

Fields marked with an * are required