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22 %
€15,590
raised of €70,000 target
by 465 supporters
Emma Styles avatar
Emma Styles

#oneRAREstep

I am fundraising for Gene Therapy for The AADC Research Trust because It will be a life changing treatment for luke

22 %
€15,590
raised of €70,000 target
by 465 supporters

#oneRAREstep

WITH YOUR HELP... The AADC Trust is launching the #oneRAREstep Campaign to raise funds for our AADCd children to access potentially life saving & transformative experimental brain delivered AAV2-hAADC Gene Replacement Therapy Treatment. THANK YOU

Charity Registration No. 1114367

Story

Thank you for visiting my page, my name is Luke and I am 4 years old. I'm the only child from Ireland diagnosed with an extremely rare neurological condition called AADC, the easiest way to explain it is like a form of baby Parkinson’s but comes with many other issues too. There are roughly 130 kids worldwide with the same condition I have. This is a life threatening condition; on average 3 children sadly pass away each year as a result of the condition.

My body and brain don't work the same way yours do. I can't eat orally and I am on a daily cocktail of many medications to help with my symptoms, but unfortunately they have a lot of bad side effects too. My days can consist of uncontrollable movements that can be very painful for me, normal illnesses such as colds and flus can be very bad for me so sleepovers in the hospital are very frequent. Due to my low muscle tone I am prone to aspirating, which can feel like I’m drowning on my saliva and sadly often results in pneumonia. I suffer from a seizure like symptom called an oculogyric crisis roughly once a week. I need strong sedatives to stop my body from moving so much from the medication I am on so I can sleep. I am also non-verbal so it’s difficult for me to communicate when I’m in pain.

My body is failing me, I want to have the same chance as everyone else so hopefully I can sit up alone, crawl, walk, talk and move freely and maybe someday tell my family I love them. It’s my dream to someday be able to play with my big brother and do the things other kids take for granted but despite the difficulties life has dealt me, I still manage to smile and giggle. I need round the clock care but my many nurses and carers adore me because of my cheeky charm. 

I have been waiting all of my life for the opportunity of gene therapy and finally the time has come! Please help me on my journey to get this life changing gene therapy as soon as possible; I will be travelling to Poland for the treatment, which could very well save my life. I'm very excited for what's to come and hope to have the chance at a better quality of life!

Thank you for helping me to change my world!

Lots of Love

Luke xx

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Supporters

465