Alexandra Griffiths Rayson

Alexi and Adam's Page

Fundraising for Alstrom Syndrome UK
£2,796
raised of £3,000 target
by 11 supporters
Donations cannot currently be made to this page
Event: Alstrom Syndrome UK Sponsored Cycle Ride, from 22 June 2012 to 25 June 2012
Participants: Adam Line
Alstrom Syndrome UK

Verified by JustGiving

RCN 1071196
We offer support, information and hope to families & individuals who are affected

Story

Updated on Jun 19th 2012 at 6:48 PM from the JustGiving API

Thank you to everyone who has supported Adam and I do far.

Thanks for taking the time to visit my JustGiving page.

Alstróms Syndrome (AS) is a rare genetic disease that affects every organ in the body. It causes heart failure, deafblimdness, obesity and type 2 Diabetes.

I have suffered from AS since I was born. I was blind by aged 2 and i lost my hearing when I was 7. I first went into heart failure at 6 weeks old and many continued to do so for the first year and a half of my life. I was constantly in and out of hospital often spending months at a time there. I was on a whole host of different drugs and my kitchen looked like a pharmacy it was so full of different medications. 

After being diagnosed with several different wrong conditions I was finally diagnosed with AS at aged 10. I was later diagnosed with type 2 diabetes at age 12 and then type 1 at aged 17.

After diagnosis my family found the charity Alstróms Syndrome UK (ASUK.) The CEO Kay Parkinson had 2 children with AS and my mum knew that after many years of being 'different' and not belonging we'd finally found somewhere we fitted in perfectly.

The charity have become like family to us, they have supported us through the good times and the bad and have always been there to offer us help, advice and support. Because of the charity we have made it through everything that has been thrown at us. The charity is a wonderful support network and somewhere you feel like you fit in. There are only 50 families with the condition in the UK and even most doctors have never heard of the condition before. It is extremely scary when the professionals who are looking after you do not know what is wrong with you. You have to become the doctor and tell them about it.


I want to raise money for ASUK to say thank you for everything that they have done for me and my family over the past 20 years. I would like to give something back, so that the can continue to support families and individuals like myself for the next 20 years.

So Adam Line and I along with 23 others are cycling 200 miles in 4 days from Torbay hospital in Devon to The Queen Elixabeth Hospital in Birmingham to raise money for the Adults clinic and so young adults can go on activity holidays and for the charity to be able to buy essentual qpuiment that their members need to improve their quality of life.

Thank you

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About the charity

Alstrom Syndrome UK

Verified by JustGiving

RCN 1071196
We support and empower families who are affected by one of the rarest diseases in the world, Alstrom Syndrome. This complex condition affects every organ in the body and can lead to progressive blindness and deafness. Providing information, research opportunities, medical clinics & fun activities.

Donation summary

Total raised
£2,795.60
+ £673.90 Gift Aid
Online donations
£2,795.60
Offline donations
£0.00

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