Chloe Helen Miles, 21, from Aldershot, Hampshire, hopes to raise a staggering £30,000 so Enzo Thompson, four, can access stem cell treatment and live as independently as possible.
“I knew straight away that I wanted to shave my hair for Enz, for a chance at a better quality of life for such a kind and funny boy,” she told HuffPost UK.
“And I know my brother would’ve wanted me to.”
Chloe was left distraught when her brother Dylan died at the age of 17. He lived with Wolf Hirschhorn Syndrome, a rare genetic disorder which left him severely disabled.
One year after his death, she began volunteering with Sebastian’s Action Trust - a charity supporting the families of seriously ill children, which had helped Chloe and her family when Dylan was alive.
The charity introduced her to Enzo and his family in November 2015 and from there, a beautiful relationship blossomed.
“I was a little worried that meeting Enzo for the first time would be difficult and I did wonder if I was ready many times before my first visit,” Chloe said.
“But when I met Enzo and his family I didn’t feel overwhelmed, they made me feel very comfortable and I knew I’d made the right decision.”
Focusing on this new relationship also helped her grieve.
“When Dylan passed away I had no one to be silly for, no one to entertain and interact with in the way that I’d known for my whole life with D,” she said.
“Becoming such great friends with Enzo and his little brother, Luca [aged two], has helped me so much with my grieving process and helped me to keep hold of that silliness.”
Enzo was diagnosed with cerebral palsy when he was five months old. The condition means he is severely physically disabled and is currently unable to sit, crawl, stand or walk. He is non-verbal and is fed through a gastrostomy (a device allowing him to be fed directly into his stomach).
Enzo’s parents, Caroline Thompson, 31, and Daniel Thompson, 29, try to ease their young son’s symptoms with daily physiotherapy sessions, however Enzo often finds even the simplest of tasks difficult and exhausting.
Caroline, a stay-at-home mum from Odham, Hook, told HuffPost UK: “For Enzo, any achievement is a massive achievement.
“Life for him is tough, he has to constantly push on and work hard, but he is the happiest little boy, with a fantastic personality, sense of humour and inspirational drive for life.”
Enzo has already had one round of stem cell treatment, which his parents said helped him gain better head control so that he can sit upright while assisted, in his chair for longer periods of time. They also said it helped his motor skills, “so he is now able to reach for a toy and grasp it in his hand”.
It is hoped that another round of treatment will help him even more, by giving him better head, arm and hand control, as well as movement, so that he can sit unsupported and be able to lift himself (for example, from a chair to a bed).
His parents also hope he’ll be able to one day operate a power wheelchair and live as independently as possible.
Chloe has become a huge part of the family’s life over the past two years and was able to witness firsthand the “incredible progress” from Enzo’s first round of treatment.
Now she’s set to shave her head - a grade three all over - to raise a staggering £30,000 to help him, as this type of treatment isn’t available on the NHS.
It’s commendable that anyone would shave their head for another person’s child, however Chloe is also a full-time blogger, which means her job relies heavily on appearance. So why has she decided to shave all of her hair off to help?
“When I was about seven or eight, I heard about someone shaving their head for charity and I decided that if Dylan ever needed money raised I would shave my hair off for him,” she explained.
“Unfortunately, when Dylan got ill there was nothing I could do, there was no treatment and no amount of money could have helped him.”
Chloe said she’s pretty nervous about the shave, which will take place on 2 September, but added she’s mostly excited - especially as they’ve already raised over £1,200.
Discussing the major part Chloe has played in all of their lives, Caroline said: “I don’t think we will ever be able to thank her enough for what she is doing for Enzo, but I know that she will always be a part of his life.
“She’s been such an amazing help, support and friend to Enzo - and to us all.”
Chloe will be shaving her hair at 4pm on 2 September at The William Cobbett pub in Farnham. To donate, please visit her JustGiving page.