Our son Alex is 9 years old and has been living since birth with a very rare genetic condition called H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum).
His condition affects every aspect of his daily life. Alex cannot sit independently, cannot walk, and requires 24-hour care. Every day is a huge challenge for him, especially because of the severe muscle tone and stiffness caused by his condition. We are currently preparing for baclofen pump surgery, which we hope will help reduce his pain and improve his quality of life.
Due to poor posture and the progression of his condition, Alex now has a 40% hip displacement. Because of this, we had to change his wheelchair to one that is more supportive and better adapted to his complex needs. We are incredibly grateful that the NHS provided the wheelchair for him.
Unfortunately, the essential accessories we urgently need — a canopy and rain cover — are not funded. Living in England, where rain and cold weather are part of everyday life, proper protection is absolutely necessary for Alex. These items would allow us to safely take him to hospital appointments, therapies, and even simple family outings without exposing him to rain, wind, and cold temperatures.
Despite everything he faces every single day, Alex remains the happiest, most smiley and loving little boy. His strength and beautiful smile give us the motivation to keep fighting for him every day.
We are kindly asking for help to raise funds for the canopy and rain cover for Alex’s wheelchair. Every donation, no matter how small, will help improve his comfort, safety, and daily quality of life.
Thank you from the bottom of our hearts for any support, donation, or share of our fundraiser 🩷