06:05AM, Thursday 14 August 2014
A family from Hurley are backing the campaign to build Berkshire's first hospice for children to support their three-year-old boy.
Sarah Ricketts and her husband Chris Down said Alexander Devine Children's Hospice Service's planned £5m facility would be a massive boost for their son, Jackson.
He was completely healthy until he was six months old, when he began to experience violent and painful muscle spasms - up to 20 each day.
Doctors were perplexed as to what was causing them and Jackson stopped developing at the same rate as other babies.
His troubles were brought under control with medication and frequent trips to Great Ormond Street Hospital in London.
However, his development has not improved and he struggles to remain sat up, he cannot walk and is yet to say his first word.
Jackson also suffers from intermittent bouts of paralysis that could last up to an hour at a time and doctors could still not come up with a diagnosis or a prognosis.
Answers appear to be no closer after two-and-a-half years of tests.
All of the known conditions associated with Jackson's symptoms have been ruled out, leading experts to resort to a genetic sequencing study to look for an answer in his DNA.
"It was getting worse by the day," said Sarah.
"We couldn't keep showing up at Wexham (Park Hospital) and we didn't know what to do."
"We didn't know what was going to happen from day to day."
The family had no option but to turn to hospice care for the support they needed.
However, the nearest one is an hour away in Oxford and that amount of travel with a child that could have an attack at any moment is difficult.
Sarah, 32, has already had swap full-time work for part-time hours to look after the little one
Accountant, Chris, 37, commutes to London for work.
The family does get some support from Alexander Devine carers, but they say a dedicated centre close to home would be a massive help.
"We would benefit hugely if there was something more and we had some community led support who understand," said Sarah.
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