A mother has shared the heartbreaking reality of her daughter’s life-limiting condition, saying that they have no idea how long they have left with the nine-year-old girl. Lucy Chilley-Watson, 47, was thrilled when she gave birth to her daughter, and she and partner Darren, 51, were looking forward to their child’s future. However, as their baby girl grew older, the parents, who live in Wiltshire, noticed worrying symptoms such as her struggling to sit up and being unable to crawl. At first, doctors reportedly attributed these to hypermobility, but it soon became clear that something far more sinister was at work.
When she was three, Carmela was diagnosed with LMNA congenital muscular dystrophy, an extremely rare condition that gradually causes skeletal muscles to waste away, shortening her life. “I think we’d already started grieving before we even had the diagnosis,” Lucy told NeedToKnow.co.uk. “When we were told by doctors, we straight away Googled what LMNA congenital muscular dystrophy was and Darren and I both had the biggest breakdown.”
Lucy became an emotional wreck and cried every day, but she always hid this away from people because she knew that this was Carmela’s battle, not hers. Carmela’s condition only affects one in a million babies and is different for everyone who has it. Lucy and Darren were initially told that their baby girl, born on 27 March 2014, might not make it past ten years old. In the best-case scenario, she could survive until adulthood, but she still suffers from difficult physical symptoms.
Carmela tires easily and uses a wheelchair or walker to conserve her energy levels. Her neck and shoulders are weak as her muscles are “wasting away”. Sadly, her mental health is also affected as the condition slowly progresses. Carmela’s parents have taken on the role of her full-time carers, with Lucy sacrificing her job to look after her daughter’s needs. This means that dad Darren, who runs his own business as a logistics manager, has to work away during the week, meaning he can only see his daughter on weekends.
The family is receiving support from Family Fund, the UK’s largest grant-making charity for families raising disabled or seriously ill children on low incomes. With the help of the grants, the family has been able to go to Center Parcs every year for the last few years, and they’ve been able to make memories that they will treasure. They’ve taken Tinker, their black poodle, who they are training to be Carmela’s assistance dog, on their last trip.
Despite the difficult situation, Lucy and Darren are doing everything they can to keep their daughter’s spirits up and stay positive. Lucy motivates Carmela to dream and do whatever she sets her sights on, even if she needs to do it differently. When you’re living in the moment and have such a fun-loving daughter, you forget what she’s got and just get on with it.
