A father from Sutton is on a mission to help find a cure for a rare neurological syndrome.
Vincent Johnsson, whose daughter Hannah suffers from Rett Syndrome, has been running at least 5km a day to raise money for a charity on behalf of his daughter.
Hannah appeared to be entirely healthy for the first eighteen months of her life until subtle signs started to suggest that all was not well.
Just before her third birthday, in February 2010, Hannah was diagnosed with postnatal neurological disorder Rett Syndrome.
"Ten years later, she has lost almost all her mobility, all her speech, most of her hand function and all her independent skills," said Vincent.
"She has developed seizures, scoliosis, a heart condition and extreme breathing irregularities.
"She is very sociable and engaged with the world but she is locked in, trapped inside a body which cannot do anything she tells it to.
"Her symptoms are worsening over time - it's devastating to watch."
The father of four has taken on a variety of fundraising challenges and says his five-a-day fundraiser was first inspired by his friend.
Speaking about his latest challenge, Vincent said: "The whole thing was triggered by the amazing Tim Jones, who had started running 5k a day for the year leading up to my start.
"After only having found out he was doing it days before he was coming to an end, I decided to take over the batten and started the challenge on March 3, 2020.
"Maybe at the end of this someone else will take this on from me."
He continued: "As a family, we've supported Reverse Rett ever since Hannah was diagnosed and my wife now also works for the charity.
"Rett Syndrome has been reversed in the lab and we know what causes it, so a cure within Hannah's lifetime is a very real possibility.
"And in the meantime, treatments to manage her symptoms could ensure she stays healthy and improve her quality of life.
"This is why I am doing the challenge - 5kms every day for 500 days might be tiring or inconvenient, but it's nothing compared to the battles my daughter faces every day."
Vincent's fundraiser has raised £5,367 at the time of publishing.
To donate visit here.
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