Mum Charlie, experienced a difficult pregnancy and at 33 weeks, doctors picked up something unusual on a routine scan but were unsure what it was. Baby Lara was born weighing just 2lbs and everyone knew straight away she was going to be profoundly disabled. Charlie and husband, Matthew, still had no idea of the extent of their baby daughter’s complex condition.
Over the coming months, Lara’s health remained a concern but it was not until she was nine months old, she was diagnosed with Titinopathy, an extremely rare neuromuscular condition. “The diagnosis is life-limiting, it was important to make Lara as comfortable as possible,” said Charlie. “Following gastrostomy and fundoplication surgery, Lara is gaining weight and is a healthy size, still with all the other complications but, she is a happy toddler.” Now aged 22 months, Lara still has difficulty moving her arms and legs and, with scoliosis increasing, a nurse felt she would benefit from a P-Pod, a supportive beanbag chair, which also comes with an activity frame allowing Lara to explore through play.
Charlie said, “The community nurses suggested we approach React and I was amazed at the fast response. When you’re living in a crisis, everything is such a blur but it’s nice to have someone who can assist immediately and I honestly didn’t know how much help React could give me until I needed it. Lara absolutely loves her P-Pod and sits in it every single day.” We were delighted to assist this wonderful family and if you know of parents who could do with some help, please get in touch!