BEATING The Odds
Sam’s girl is living life to the full, despite her rare condition
I hope there are many more years of memories to make
Sam Beedles, 35, St Helens
My daughter Jasmine’s 15 years of life haven’t been easy. Five days after being born in June, 2002, she stopped breathing and turned blue.
Doctors managed to save her life but soon made a disturbing discovery.
‘Jasmine’s heart is back to front,’ revealed a cardiologist. ‘And there are two holes.’ Worse, it was unfixable. Me and my husband Ben, 37, were utterly devastated.
When she was 6 months old, we learned Jasmine had Digeorge syndrome, a disorder caused by a genetic mutation in the womb.
‘She probably won’t make it to her teens,’ we were told.
But our brave girl defied the odds, despite the many problems she faced.
Walking put too much strain on Jasmine’s heart, so she needed a wheelchair and 24-hour oxygen, as well as a ventilator, as her lungs are in such a poor condition.
When Jasmine was 10, we had her little sister Zara.
Their bond was immediate – Jasmine even chose her name.
They’d hold hands, read stories together. Watching them grow up was a joy, even through the really tough times…
Digeorge syndrome is incurable, and a hospital nurse recommended a hospice called Claire House for respite care.
‘I’m not sending my daughter to one of those places,’ I insisted.
But I paid a visit, and found a lively, friendly place full of wonderful staff, determined to help seriously ill children live
life to the full. They have games, an Art room, even a pool. Jasmine was allocated 20 nights a year to spend there, and still goes for three-night stints every six to seven weeks. She loves going shopping with the staff, who always buy in plenty of her favourite food, Monster Munch!
Zara likes to go along, too.
We’ve made some precious memories at Claire House.
We don’t know how many years we’ll have Jasmine – she wasn’t supposed to come this far.
I hope there are many more years of memories left to make. Visit clairehouse.org.uk for more information.