Grandmother leads Grantham care home in fundraising for grandson's rare condition
A Grantham care home has launched a fund-raising campaign for research into Pitt-Hopkins syndrome.
Red Court Care Community, on St Edmunds Close, has chosen its charity of the year as residential manager Lin Amos’ six-year-old grandson is one of just 300 confirmed cases in the UK.
Dax Johnston, from Mablethorpe, has also agreed to be Red Court’s home mascot. Due to his condition, Dax 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.
Red Court residents and staff will be hosting a number of fund-raising 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 affects one in 225,000 to 300,000 people. The syndrome causes developmental delays, moderate to severe intellectual disability, distinctive facial features and breathing problems.
Lin 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.”
Activities will be taking place throughout the year and photos will be shared across Facebook and on the Red Homes website.
Anyone wishing to donate can visit Red Court’s Virgin Money Giving page, uk.virginmoneygiving.com/RedCourtCareCommunity21
To gift any raffle prizes to Red Court, contact redcourt@redhomes.com to arrange delivery.
