Fundraising success for family of young girl with Rett syndrome

The parents of a young girl living with ultra-rare Rett syndrome are raising money for an eye gaze computer – which will enable their daughter to communicate with them using only her eyes.

Lottie McCarron, Romford, was diagnosed with Rett syndrome in 2015.

The condition is a rare genetic disorder that affects brain development and is estimated to affect only one in every 12,000 young girls in the UK.

The four-year-old also has epilepsy, scoliosis and dystonia, meaning that she is unable to communicate with her family verbally.

Lottie’s mother Lindsay and other family members such as uncle Lee Nash are campaigning to raise approximately £15,000 for a state-of-the-art eye gaze computer.

The family have already managed to raise around £4,000 so far, thanks to a charity fun day held at nearby mall, The Liberty Shopping Centre, which recently hosted a series of workshops and fundraising events.

Uncle Lee Nash, who works as a security officer at the mall, helped to organise the events.

He said: “The Liberty and all the generous shoppers who made donations have helped us move that little bit closer to our target.

“It was an amazing day and the family and I are so thankful for those who took the time to help support Lottie’s campaign.”

The event, dubbed ‘One Great Day’, also raised money for Great Ormond Street Hospital.

Jonathan Poole, general manager at The Liberty Shopping Centre, said: “Here at The Liberty we have been overwhelmed with the support that shoppers have shown for our recent events.

“To know that we have helped raise vital funds is an honour and we certainly had ‘One Great Day’ supporting these two fantastic causes.”

At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions, including Rett syndrome. For more information about the services we provide, please contact us today.