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Following the devastating diagnosis of Duchenne muscular dystrophy when their son Dominic was just four years old, Nikita and Dan set up Dominic’s Sunshine Trust.

“People always told us how beautiful our son is,” says Nikita. “They would always say he looks like an angel but also questioned why he seemed so little or wasn’t hitting the expected milestones. As a mum, I guess I filled that gap with excuses. I started to wonder why something seemed a little bit off and we saw various health professionals to try and answer concerns on speech, balance, coordination and melt downs. After two long years, Dominic was diagnosed with autism.”

During this time Dominic was at nursery and had repeated falls, the nursery staff noticed his lack of strength and suggested certain exercises. Nikita and Dan couldn’t understand why it wasn’t working as they were doing everything asked of them. One day at school, Dominic had another fall that ended in a trip to A&E. At this point they demanded the paediatrician do something, test anything that could explain why this was happening, and they took some blood tests.

A few days later, the family received a letter explaining that Dominic’s blood test showed a very high CK (creatine kinase) level. Nikita and Dan googled this and muscular dystrophy came up, which made perfect sense with all the issues Dominic was having, but they couldn’t believe this was happening to their son. Soon after, Dominic was diagnosed with Duchenne muscular dystrophy and a month later, Nikita was diagnosed as a carrier of the condition.

“We believed in many ways, we were the perfect family, husband, wife, son, daughter, even the dog and the house,” says Nikita. “After Dominic’s diagnosis our whole world came crashing down around us and, in many ways, it ended our happily ever after.”

The family hope for many happy years with their beautiful son and their motivation for setting up Dominic’s Sunshine Trust is to make everyday a little bit brighter and to create as many moments together as possible. With more funding, research and time one day, hopefully no child or family will endure this.

“Dominic is my sunshine, so please don’t let Duchenne take my sunshine away.” – Nikita, Dominic’s mum

You can follow Dominic’s Sunshine Trust on Facebook.

Net proceeds from Dominic’s Sunshine Trust will be split 80% for research into Duchenne muscular dystrophy and 20% for the family’s welfare.

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