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.
Little Teddy was born with Duchenne MD, a life-limiting condition which will cause his muscles to degenerate and stop functioning over time due to a lack of dystrophin that muscles need to strengthen and function.
There is currently no cure for the condition and it is one of the most common and severe forms of MD.
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Speaking to Belfast Live, Teddy's parents Bethany and Rob, who live in the Shankill area, opened up about the moment they learned of their son's diagnosis
"When I was pregnant, I found out that my granny had been a carrier for MD," Bethany said.
"The way that Muscular Dystrophy works, it's the X chromosome where the problem lies. There is a 50/50 chance of any son that I would have, having the disease because I was a carrier. I was given the option after 20 weeks to do an amniocentesis, but with the doctors, we decided that we wouldn't do that.
"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.
"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.
"We'll notice things when Teddy starts to move more, he still is very young. There is a likelihood that he will have a slower development because of the way his muscles are and it is likely that form an early age he may be a bit slower walking and sitting up, things like that.
"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."
The family has set up a Go Fund Me page, with hopes to "provide Teddy the same light he has provided us".
"Our focus is now on the future to raise money for; potential treatment options (most likely outside of the UK) and vital funds for future projects which will allow us to generate more funds for Teddy, and donations to Duchenne charities and research which will hopefully lead to a cure for Teddy and boys like him," Teddy's parents added.
"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.
"We had an appointment with the genetics team at the Royal who said their is a type of therapy that Teddy could potentially do if he hit the criteria, but we have been looking further afield too. The treatment here is very limited. We aren't quite sure what the treatment will be, because it is early days.
"What we will say, is that we have been overwhelmed by the generosity of people. It is really nice to see messages of support and people donating, and offering their time. The last time we looked at the pager, it was over £600, which is amazing. People in the local community have been great, they are helping us raise awareness for Teddy's condition, and I know they have a lot going on in their own lives too.
"It's a marathon and not a sprint, and in some ways we are lucky to know at such an early stage, about Teddy's diagnosis, rather than several years down the line. It gives us a bit of time to prepare and to start fundraising efforts to hopefully access potential treatments."
Please follow this link to donate to Teddy's fundraiser, and follow the Fight for Teddy campaign on social media.
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