A WIRRAL family whose son defied the odds countless times are fundraising for Claire House Children’s Hospice in the hope of holding a day in his memory.

When Ryan James Hughes was born, his parents thought they had been blessed with the quietest baby in the hospital - but there was a reason for that.

After being taken to the doctor’s with a suspected ear infection at just six-weeks-old, Ryan began having seizures in the waiting room.

He was taken to hospital and diagnosed with Ohtahara Syndrome, a rare form of epilepsy that leaves sufferers severely disabled and completely dependent.

“We were told that he wouldn’t see his first birthday. Yet we had six and a half years with him,” said mum Sharon, from Wallasey.

Ryan passed away on May 21.

Throughout his life, Ryan was supported by Claire House, something that continues to this day.

Mum Sharon and dad Kyle, both aged 28, want to give something back to the Bebington-based charity with their fundraising night on November 6.

Sharon said: “Our lifestyle changed so much with Ryan. Normally when you plan a child, the baby fits into your life and home but with Ryan, our whole lives revolved totally around him.

“We found it hard to take in when doctors told us that Ryan would be a bit behind other children. I thought we’d just get him a tutor without really realising the severity of Ryan’s condition.

“When Ryan had to have a nasogastric tube fitted, we noticed that people were more likely to stare. This really annoyed us, we would rather they asked us about Ryan than just staring at us.

“Up until this point, Ryan had always looked like a regular baby to us. It wasn’t until Ryan’s younger brother Nathan hit the typical milestones quickly that we realised just how delayed Ryan’s development was and what milestones he had missed.”

It became the family’s “routine” to be in and out of hospital. At Ryan’s poorliest, he was in Alder Hey for nine months.

Sharon - who is also mum to Nathan, aged five, Lucy, aged one, and Mia, aged six months – was told Ryan would not survive.

When doctors said there was no more they could do for him, Ryan’s parents made the heartbreaking decision for Ryan not to be resuscitated so he could go to Claire House for end of life care.

The Bebington hospice gave the family the chance to make some incredible memories with Ryan.

“We had a film night where Ryan was brought in in his bed and we could all sit with him in one of the living rooms together as a family,” said Sharon.

“Ryan’s room at Claire House was decorated with twinkly lights. We were there for about two and a half weeks before we had to face the ventilation being taken away. We were told when this happened; we were likely to have less than 24 hours with Ryan.

“A week later, Ryan was still with us and ventilator free which surprised the medical professionals.”

A care package was put together to allow Ryan to return home, with short hospital stays here and there following.

But as time went on, the admissions became longer and Ryan became more dependent on oxygen.

Sharon said: “Our son passed away peacefully during the early hours of May 21, with both of us cuddling him, nestled in dad’s arms.

“Even before Ryan passed away, I feel we’ve grieved all our lives for him. You imagine what your children are going to be like when they’re older and you have dreams for their future.

“These thoughts and dreams can never be experienced now with Ryan.”

After Ryan’s death, the family continued to be supported by Claire House, who helped with the order of service for his funeral, ideas for flowers, filling out official forms and providing meals for them.

“We still feel part of the Claire House family that Ryan was also a part of,” said Sharon.

“The support from them has been truly outstanding. Before I had Ryan, my perception was that Claire House is a sad place but it needs to be experienced to be truly appreciated.

“I want to support the work of Claire House by raising money to pay for a day in Ryan’s memory.”

A charity night will be held at the Great Float Social Club in Seacombe on November 6. Tickets cost £5 and can be bought by calling Sharon on 07949255751.

Anyone who would like to donate raffle or auction prizes for the charity night, or any local caterers who can donate food towards the buffer, should also contact Sharon.