When you go somewhere new, it can be a tad daunting can’t it? So little Drae was absolutely beaming with happiness that the lovely Isla was at the Devizes hospice to welcome him on his very first visit.
The pair (Isla on the left and Drae on the right) soon became the best of friends as they shared a fun hospice session together with our care team, while their families enjoyed a much-needed break.
Drae needs lots of attention and specialist clinical care for his extremely rare neuro-genetic disorder, which is called TBCK Related Neurodevelopmental disorder. At just 11 months old, Drae is the youngest person to have this complex condition – there are just 10 reported cases of the condition in the UK and around 35 worldwide.
Isla, who is now nearly two years old, was born 24 weeks early weighing just 517 grams. She has chronic lung disease and other conditions, which require round-the-clock care.
Thanks to our lovely supporters, we can provide a lifeline of care to local families, like Isla and Drae’s, and help them to make many happy memories.
