A Portrush mother has hailed the ‘fantastic’ ongoing support given to her baby daughter by the Northern Ireland Children’s Hospice.
Speaking to The Coleraine Times, Michelle Christie revealed for the first time the enormous daily challenges in caring for 11-month-old Amelia.
And now Michelle hopes to give something back to the Hospice by raising funds on its behalf and running the Belfast Marathon alongside her sister, Donna, in May.
Michelle, from Hopefield Avenue, said: “Amelia was born with an incurable life limiting condition.
“At present she cannot interpret what she sees, she is mildly deaf in her left ear, she has cerebral palsy, she has a neuropathic bladder, she is tubefed and up until a month ago she required oxygen 24/7.
“This means round the clock care and many hospital appointments.”
Michelle described the support and care of the Children’s Hospice for Amelia as absolutely vital.
“We are supported greatly by community nurses and the Children’s Hospice.
“This is a fantastic charity we never ever thought we’d need and I decided as they are the nominated charity this year for the Belfast Marathon that I will train for the half marathon and raise what I can to return a little of what the Hospice is doing for us.
“They have given us tremendous support during Amelia’s sickness and given us much needed respite.
“My sister Donna is doing the entire 26.2 miles. Training has well and truly started and I go out running every other day usually pushing Amelia.”
Michelle added: “We are trying to raise as much as possible. This is the first time I’ve ever tried to raise money and it’s for something of course which I hold close to my heart.
“Thanks also to all the amazing staff at the Causeway Hospital Children’s Ward for their ongoing support since Amelia’s birth.”
The Northern Ireland Children’s Hospice cares for children and young people with life-limiting and life-threatening conditions and supports their families and those close to them.
Baby Amelia is just one more than 750 life-limited children and young people living in Northern Ireland suffering from conditions such as Muscular Dystrophy and genetic disorders such as Batten’s Disease and other life-threatening conditions such as cancer and heart disease.
These children have very complex needs often requiring 24 hour care and many will die before reaching adulthood.
Anyone who wishes to support Michelle and Donna in their fundraising can log onto the justgiving page www.justgiving.com/Michelle-Christie0
STORY: DAVID RANKIN