When Seanain was born with spina bifida and hydrocephalus, mum Kathleen and dad Sean were warned she wouldn’t live past five years old. Now, as proud parents of a nine-year-old girl who loves what every other nine-year-old girl loves, they count themselves lucky every day.  

But not every day is a good day. Seanain is paralysed from the waist down, her bladder and bowel don’t work and she’s been tube-fed all her life. To add to that, she’s had many high-risk operations to manage 15 other conditions.  

 “Seanain’s condition has worsened every year,” continues Kathleen. “Every couple of months, there’s a new diagnosis.” 

Because of the coronavirus, the family has been isolating since March 2020 to protect Seanain. But even in a house as full of love as theirs, there are times when Kathleen, Sean and older sisters Chloe and Grace feel the strain.  

That’s when they know they can turn to Northern Ireland Children’s Hospice in Belfast.  

The lifeline even the most caring families need

Like so many children’s support services, Northern Ireland Children’s Hospice was forced to pause some of their services when the coronavirus hit. But since August 2020, it’s been able once more to offer families like Seanain’s the care they so urgently need in Horizon House, the only Children’s Hospice in Northern Ireland. 

The hospice runs a huge range of sessions and supported short breaks for children with severe medical conditions and is supported by funding from BBC Children in Need. But ultimately, it’s the generous support of the public that keeps it going, along with countless other projects for young people all across the UK.  

Kathleen explains exactly why it’s such a lifeline when the pressure of caring for Seanain gets too much for them. “When she goes into the hospice, that’s our safe haven where she’s safe, cared for, and having fun – we can spend some  special time with the other two girls.”  

For Seanain, meanwhile, it’s a chance to disown her uncool parents in front of her new friends… just like any other nine-year-old. 

“The first time she went,” remembers Kathleen, “we jokingly said, ‘We’ll just stay with you’ and she’s like, ‘No no, go home!’ But that’s OK, because we know she has fun. She just absolutely loves it.”