'When we found out that I was a carrier, I didn't want to think about it, because I was still pregnant. It was a difficult pregnancy and I was very sick and I didn't want to affect the baby. Now I want to know everything about it.'
The parents of a three-month-old child have started a campaign to help their little boy access treatment and to have an improved quality of life.
"There would be no need for it, because the outcome would never be changed. When Teddy was born, they took blood tests from him and after a few months, we found out in April that he had it. "The natural progression unfortunately is that he'll likely need a wheelchair because his muscles won't be as strong as they otherwise would be."
"Unfortunately, the NHS do not have the same array of treatments options as places like the US. The options and clinical trials are currently around £40,000 to £50,000 per year. Teddy has had an early diagnosis which gives us a chance to start our fundraising efforts earlier than most.
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