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sam allen

#hopeforMarcus #oneRAREstep

Raising funds for life saving surgery for Marcus for The AADC Research Trust because It will maximise his quality of life

100 %
£70,662
raised of £70,000 target
by 1,443 supporters
Donate

#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

compose this just giving page with the help of my mum and dad in hope you might be able to help me. Please let me introduce myself to you. My name is Marcus Allen and I’m 12 years old with a great sense of humour and a smile that would light up any room. I am the eldest of 3 brother’s whom I adore. I live in the close knit village of Romiley in the North West of England with my family. My family mean the world to me and the love we have for each other is beyond description. Their presence and the love that surrounds me keeps me strong.. Just one part of me makes me different in so many ways and that is AADC.

I was diagnosed with AADC ( Aromatic Amino Acid Decarboxylase Deficiency) a  form of Parkinson’s disease at 6 months old. AADC is a life altering//threatening disease which is a genetically inherited neurological and muscular disorder that affects the brains ability to produce dopamine and serotonin that carry signals between nerve cells and the brain. AADC impacts most aspects of my life including my mobility and development.

Life is a constant struggle for me .I have a feeding tube and experience oculogyric crisis’ which is similar to a seizure where my eyes roll back in my head and my body goes stiff. I have one of these episodes once a week which are very painful and distressing . They can last for hours.

Due to my condition I can’t roll over or sit up unaided or use my hands purposefully .  I have no voice at the moment too which makes my condition so frustrating . In addition to all this I take a vast variety of medications which are normally used in adults to treat Parkinson’s disease. These drugs have some negative side effects such as muscle spasms and dystonia of the whole body. I experience a lot of pain and discomfort.

AADC is an extremely rare disease with only 130 cases worldwide. There is currently no cure for this debilitating condition. However, there is now a treatment available that could change MY life and this is my last hope.

I feel now is the right time to ask for you to support me in helping ME get to Poland for this  pioneering new treatment. A treatment which could alter MY life immensely. A treatment that could unlock ME from my body and give ME a better quality of life. A treatment that could save MY life and free me of pain.

My family and friends see me trapped inside a body that will no longer work for ME which has been unimaginable to describe. This pioneering new treatment has provided HOPE to us all. I would be grateful of any financial help towards funding this procedure for the  GENE THERAPY REPLACEMENT TREATMENT.

It would mean so much to ME for someone to take an interest in what the future could hold for children like ME. We are loosing an average of 3 children a year to this debilitating life threatening disease. The results from this treatment have transformed lives and enabled children the potential to reach milestones we all take for granted.Please help change these statistics.

All my love,
Marcus Allen

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