A local care home in Grantham has launched its very own fundraising campaign to raise vital funds for Pitt-Hopkins syndrome.
Red Court Care Community on St Edmunds Close has chosen Pitt-Hopkins syndrome as its charity of the year. Both residents and staff will be hosting a number of fundraising events to not only raise awareness but also generate much needed funds to provide support for those undergoing a diagnosis.
Pitt-Hopkins syndrome is a very rare genetic syndrome which effects one in 225,000 to 300,000 people. The syndrome causes developmental delays, moderate to severe intellectual disability distinctive facial features and breathing problems. It is thought that there are around 300 confirmed diagnosed cases in the UK with six-year-old Dax Johnston, from Mablethorpe being one of them.
Due to Dax’s condition, he cannot speak, eat or move by himself. He will always require specialist care which includes his educational needs. Dax’s parents Katie Amos and Lee Johnston are very proud of him and work together to ensure he receives the highest quality of care for his future.
Lin Amos, residential manager at Red Court Care Community said:
“We’re proud to be supporting Pitt-Hopkins this year and Dax has agreed to be our home mascot too. This is a charity very close to my heart as Dax is my grandson and I have seen the impact it has had on his life. He is such a fantastic, bubbly little boy and his parents are always willing to talk about his condition.
“With Pitt-Hopkins being so rare, we wanted to raise awareness and help families currently awaiting a diagnosis or even wanting to find out more about it. Knowing we’ve made a difference will be extremely rewarding.”