Hello, my name is Alison, and I’m fundraising for my son, Aiden, and for our family.

Aiden is 17 years old and was born with a rare terminal chromosome deletion (14q32.3). At the time of his birth, he was believed to be only the fifth person in the world diagnosed with this exact deletion. We were told he may not live past his first birthday. At just nine months old he underwent emergency, life-saving open heart surgery. His life expectancy has always been uncertain, and remains so today.

Despite all of this, Aiden has fought every battle with unbelievable strength.

About Our Family

We are a close family of five—my husband, myself, Aiden (17), Esme (12), and little Helaina (22 months). We have always worked hard to give our children a safe, loving home. My husband is Aiden’s full-time registered carer, which means we rely on a single income.

For 17 years, life has been anything but easy, especially for Aiden. Because so little is known about his condition— through micro array blood testing we discovered he has over 200 missing genes, most of which are still not understood—his healthcare team and we as parents have had to learn from Aiden himself as new challenges presented themselves. Every year he is still with us is a blessing, but also a constant worry as we try to prepare for an unpredictable future.

Aiden’s Daily Life and Health

Aiden is non-verbal, vulnerable, and relies fully on 1:1 support for every aspect of daily living. He cannot stand or walk independently. He moves around by bum-shuffling, uses a wheelchair for distance, or needs full adult support or a KY walker for short periods. He has worked incredibly hard to reach even this level of mobility.

Amongst physical and learning disabilities, his condition affects his health in many ways. Particularly, in the last three years, his health has declined significantly:

• 2022: He spent the entire Christmas period in hospital fighting pneumonia.

• 2023–2025: He faced severe gastric issues, required an emergency blood transfusion, and underwent urgent investigations to rule out cancer after a suspicious ulcer was found.

• 2024: He underwent knee surgery due to repeated dislocations and continued ongoing physiotherapy that has been a significant aspect of care throughout his life.

• He also has significant scoliosis and Osteoporosis, and spinal surgery is a very real possibility in his future.

• His gastric problems remain unresolved and continue to affect his overall health.

Through all of this, Aiden still smiles. He brightens every room he enters. He may not have a voice, but he leaves a lasting impression on everyone who meets him. So today, I am raising mine on his behalf.

Why We Need Help

Our home should be a place of safety, comfort, and accessibility. Instead, it has become a constant struggle.

Since buying the property in 2019, we’ve faced endless repairs and maintenance. We have spent years trying to save for essential home adaptations—wider spaces, accessibility features, safe equipment—but every time we manage to save, the money gets swallowed by repairs, emergencies, or income loss during Aiden’s hospital stays.

Aiden’s bedroom is too small to meet his needs. It took three years to finally receive a suitable bed, but even that cannot be used as intended because the space simply isn’t big enough.

Recently, I also learned that Aiden should have had a disability social worker throughout his childhood—support he desperately needed. Due to an administrative error, he was completely missed. This means he lost out on funding, respite opportunities, and adjustments that could have supported him and us for years.

We are now trying to raise the funds ourselves to make our home safe and suitable for Aiden’s present and future needs.

What Your Support Will Do

Every donation will go directly toward essential home improvements and accessibility adaptations, ensuring that:

• Aiden can continue to live safely at home with us as he enters adulthood.

• We can meet his complex medical, physical, and personal care needs.

• Our family can finally have a functional home that eases the daily strain we’ve lived under for so long.

• We can focus more on precious time together, and less on financial pressure, fear, and constant crisis-management.

Being a young vulnerable person, these improvements would allow Aiden to continue living at home with us as he transitions into Adulthood and services. And improve our whole quality of life as a family taking away a huge part of the financial pressure we are currently facing.

With any funds raised, we will make essential improvements to our home so it can support Aiden’s needs now and in the future. This includes creating more space downstairs to improve his accessibility, expanding his bedroom so we can care for him more safely, and enlarging our kitchen so we can finally sit together as a family and give Aiden more freedom to reach what he needs.

We also hope to improve wheelchair access at the front of our home and build an additional downstairs room that could serve as a future sleeping and care space for Aiden if his needs change.

Every contribution helps us create a safer, more accessible home where Aiden can grow with comfort and independence.

I spent three years working with the council to try to secure a Disability Living Grant so we could extend our home and make the adaptations we desperately need. After all the referrals, assessments, and paperwork, the application was denied as the rules became tighter during this process.

I also applied to DIY SOS. I was genuinely grateful when our application was shortlisted, moved through each stage, and made it all the way to the final round where it was presented to BBC executives alongside other applicants. Sadly, we were not selected in the end.

And so, with an incredibly pleading hopeful heart, I am appealing to the public. Even if it means I only achieve in getting my sons voice heard - let it reach as far as it can!

From Our Family to Yours

Aiden has survived more in 17 years than most do in a lifetime. He is our warrior—gentle, loving, brave beyond measure. We want to give him the home he deserves, the security he needs, and the best quality of life possible for whatever the future holds.

If you are able to donate, share, or simply send your good thoughts, we are truly grateful.

Thank you for taking the time to read our story and for helping us fight for Aiden’s future.