A family from Stanmore are hoping to raise awareness about the challenges for people with disabilities given the current climate.
Shiv Thakrar from Stanmore suffers from Duchenne Muscular Dystrophy, which causes weaknesses in his muscles. It is a disability which currently has no cure or effective treatment.
Since his diagnosis in 2014, the family have set up Smile with Shiv which helps to raise awareness and raise money for Duchenne UK.
His mother Sejal said that although right now is a difficult time for everyone, it is particularly challenging for those with disabilities.
Recently the family have had some bad news as two promising clinical trial drugs have been abandoned.
Sejal said that the stopping of the clinical trials is a big blow for everyone in the community that is searching for a cure for Duchenne.
She said: “Unfortunately just over the last two weeks two drugs in clinical trials that we had a lot of hope for, have stopped the clinical trials and that has been a really big blow for the community because there is nothing out there for us.
“We understand it is a really difficult time at the moment, but we are desperate for an effective treatment or cure for Duchenne.”
Although fundraising has been hard recently, Sejal’s niece recently took part in the virtual London Marathon raising over £3,000.
Sejal said: “We haven’t really expected anyone to do anything for us. It was really heart-warming.”
To donate to Smile with Shiv go to smilewithshiv.org
Picture credit: Smile with Shiv
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