For Taniesha’s family, life would be very hard without the support of Forget Me Not.
Forget Me Not has been there right from the beginning: “They came to my antenatal appointments and helped break down what the doctors were telling us so we could understand. It was a scary time, but Forget Me Not provided the emotional support we needed. They still do.”
Little Taniesha has faced a mountain of challenges. Diagnosed with a congenital heart condition before birth, she also has Downs Syndrome and has undergone a number of serious heart and bowel operations.
When Taniesha was very young, life was very hard. Deprived of sleep, the family had to come to terms with new medication routines and caring for their seriously ill daughter: “Taniesha wasn’t sleeping so we weren’t sleeping. I had to set alarms to remind me when she needed to take which medication, because you’re that busy, you don’t know what you’re doing and you’re that tired, you forget what you need to do.”
But Forget Me Not has helped the family to feel less alone and has played a vital role in helping Lisa and her family deal with the challenges they’ve faced. “Forget Me Not’s been there throughout and I don’t think, emotionally, we’d have coped otherwise.”
We also support Taniesha's sister Lucie: “It is amazing to be Taniesha's older sister, mostly because she's funny and cute, it's nice to have someone to spend time with and to watch grow up with me. It makes me fed up because she can't do things I do because she gets tired after a little time and that she can't have her ears pierced. The hospice helped me try not to worry when she has to go for surgeries and explained and helped me understand that she may not live as long as other children.”
The hospice has been a sanctuary where Taniesha doesn’t have limits: “I don’t feel she’s restricted in what she can do here - there’s always someone to look after her – and everyone understands what she needs.”
As well as caring for Taniesha and providing sibling support, Forget Me Not also gives Mum Lisa time to herself: “When she stays at the hospice for the night I know I can fully relax.”
Forget Me Not is a lifeline to her family, providing support throughout her life for the whole family. “Every time I have an issue, they’re the first people I call. They help explain things, they understand my state of mind and they don’t judge, they just get it.”
There are no limits to what we'll do for families like Taniesha’s.
More and more families like hers need the help of children's hospices, and the hospices need to be supported to continue.