Care at Christmas: Oscar needs round-the-clock care and with the help of Acorns Children's Hospice he is thriving

As an expectant mum she had the ‘perfect pregnancy’ and was over the moon when her little bundle of joy Oscar-Ray arrived at 40 weeks. 

But just two days later he started having seizures and was taken to an hospital neonatal unit where the specialist team found he had a condition known as migrating partial Seizures of lnfancy – a serious form of epilepsy which causes severe developmental delays.

“At their worst, Oscar would have as many as five seizures every hour. I didn’t know what was happening, there was just a lot of hospital stays – all I knew at the beginning was tests and hospitals. Oscar is unable to sit or hold his own head. He doesn’t reach out for things, so he’s still like a newborn baby and requires round-the-clock care.”

“When we were finally able to come home, my anxiety was through of the roof. Adjusting took a while. In a way I was grieving for the child that I thought I was going to have. To be told that Oscar’s got a life limiting condition and that children with his condition don’t usually live past early childhood, there’s so much to take in and so many emotions. You feel emotions you never thought you had and it’s just like one big rollercoaster. What I’ve learnt to do now is make as many memories as we can.”

Charlotte, aged 32, was subsequently introduced to the Acorns Children’s Hospice in Walstead Road in Walsall as a place where she could get the specialist care and support needed, not just for Oscar-Ray now aged seven, but for herself too.

Initially she felt reluctant and anxious but the care shown by the specialist staff meant they soon felt like family. The O'Neill's, who live in West Bromwich, have been visiting the hospice for more than six years.

“The thought of leaving Oscar at that point was like, no. I didn’t ever think I would do that. I had no idea what was going to happen or what it would be like there. But I knew that it would be something good for Oscar.

“Now I’d be lost without Acorns. I can’t leave Oscar with just anybody, Acorns has just been amazing. I’m allowed to just take him there and I get the freedom to unwind. Oscar’s seizures make him really sleepy, so I try and get a lot in when he’s awake. I don’t want him to ever miss out.

“He gets to do so much at Acorns. I never thought that Oscar would make cards and crafts but at Acorns he does. They’re precious things that I can hold on to. They’re things I’m going to have forever.”

They were among 60 families to recently enjoy a visit by Father Christmas.

The family is among the more than 1,000 from the Black Country, Birmingham, Staffordshire and Wyre Forest areas supported by the trust every year at centres based in Walsall, Selly Oak and Worcester.

The Express & Star has launched it's Care at Christmas appeal in support of the trust. Donate to give the gift of Acorns vital care and support to ensure no family caring for a seriously ill child in the region is facing faces a difficult journey alone.

Donate to Acorns here: acorns.org.uk/Star-Appeal