Seven-year-old Ollie Taylor has been described as “a little fighter” after defying doctors’ expectations that he wouldn’t survive beyond the age of two.
His mum Sian first knew something was wrong when she was 33 weeks pregnant and a scan picked up an abnormality with Ollie’s brain.
When he was born he wasn’t breathing and had to be resuscitated three times.
‘His condition affects him in many, many ways’
Sian said: “I never got to enjoy him as a baby. Right from day one there were thousands of appointments.”
Ollie, from Cardiff, has Wolf-Hirschhorn Syndrome – a genetic condition caused by a deletion of material within the fourth chromosome.
“His condition affects him in many, many ways,” said Sian.
“He has low muscle tone, he can’t feed, can’t chew and has a poor swallow.
“He has a hole in his heart. He has a small head, slow growth, and also suffers from epilepsy.”
Ty Hafan’s support was first offered to the family in 2010 providing relief for Sian, her husband Simon, and their eldest son Isaac.
“I really think we needed a break because I hadn’t slept properly and had been up every hour during the night” added Sian.
“Since Ollie was born we have been checking on him hourly for seizures, doing continual feeds, as well as caring for the needs of his three-year-old brother. We definitely needed a rest.”
The short-break care at the hospice enables the family to spend quality time together and unwind from the stresses that come with caring for a child with complex round-the-clock needs.
“It is relentless. All day and night and all week long, which is why visiting Ty Hafan is so important for us as it’s something to look forward to,” said Sian.
‘It’s a lifeline for families’
Sian can’t imagine her life without Ty Hafan in their lives.
“It is a lifeline for families,” she said.
“I think it saves marriages. It keeps families sane and helps make family life possible.
“Ty Hafan helps create positive memories. The reality is that he has a life-limiting condition. This is why we want Ollie to reach his full potential – whatever that may be.”
Despite his problems Ollie is enjoying life and charms everyone he meets with his adorable smile.
“He has a happy life and he makes people around him happy,” said Sian.
“He has a very magnetic personality and there is something very lovely and special about him. He loves Ty Hafan so much.
“The staff adore him and he has such a wonderful time when he’s there. We can’t thank Ty Hafan enough for everything they do for us.”
The charity relies on the generosity of the public to offer its unique service to life-limited children and their families.
Appeal for help
It is asking individuals to do what they do best and fundraise for Ty Hafan this Children’s Hospice Week.
Alison Stallard, Ty Hafan’s head of regional fundraising, said: “We all have something we do best – something that can raise money for Ty Hafan.
“Put your thinking cap on and ask yourself: ‘What’s my best?’ Is it baking a batch of cakes and hosting afternoon tea or holding a quiz night at work?
“Whatever you do best we need you to embrace your fundraising passion and join Team Ty Hafan today.”