Thomas's page

Thomas Billam is raising money for BBS UK

Participants: Matthew Berlansky (A.K.A Slovak Matt) - "Trusty" Guide Runner

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Virtual Edinburgh Marathon Festival Half Marathon 2021 · 30 May 2021 ·

We support people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK. We are a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.

Story

Thanks for taking the time to visit my JustGiving page.

My name is Thomas, a soon to be BBS UK fundraiser, looking to begin a project that will span the coming months, with the goal to raise money for my incredible little sister (as well as others) who suffers from a condition called Bardet Biedl syndrome (BBS). BBS is a syndrome that effects only a handful of people in the UK (little over 500 known cases nationwide), but has a lasting impact on the person's livelihood. From visual impairment to obesity, speech disorders to auditory deficiencies the syndrome effects almost every part of the carrier's life. As of yet there is no cure, but I am hoping with further progress in genetic studies, soon we can find a way! 

Jemima is thirteen years old and is the creative, inspiring and bold member of the family who loves to cheer us up whenever we’re down. She's courageous and for that reason, I recently felt that it’s my turn to try to do something equally as brave as she is.

Unfortunately for her, as with many who suffer the condition, her eyesight has been her greatest struggle (among many) in recent years, with specialists now explaining that she will be blind in the near future, a frightening prospect, but one which Jemima is taking in her stride (with Michelle Cane, her bejewelled white stick, by her side).

For this reason, I have decided to take on the challenge of the Edinburgh Half Marathon next year. But as a twist, I will be running it blindfolded - giving myself an opportunity to experience some of the struggles that she will face, albeit in my case, for only 21km.

For more information please visit the BBS UK website at https://www.lmbbs.org.uk/

Any support that you can give will be truly appreciated! 

Thomas 

 

 

Donation summary

Total
£2,221.12
+ £195.00 Gift Aid
Online
£2,221.12
Offline
£0.00

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