Fundraising drive to allow Sutton family to stay with their disabled son in hospital

Tommy Hibbert, six, was born in 2017 with a rare dwarfism condition, spondyloepiphyseal dysplasia congenita (SEDc), and his journey so far has not been an easy one.

His mum, Tracy Hibbert, said: “Tommy was diagnosed at 20 weeks pregnant as having small arms and legs, he had a small hole in his heart, high ventricles on his brain, and a barrelled shaped chest.

“We were offered the choice to terminate the pregnancy as they couldn't say whether he would survive pregnancy, let alone the birth.

“This wasn't an option we were willing to take and we progressed with the pregnancy with frequent monitoring.

“I had to be rushed in for an emergency C section and he wasn't breathing for 16 minutes before the team at King’s Mill Hospital managed to get him stable enough to be transferred to NICU at Queens Medical Centre.

“The first three weeks was very rough for him, which resulted in him having a tracheostomy, as they discovered he had a small airway.

“He was diagnosed with a Hypoxic-ischaemic encephalopathy (HIE) injury following his lack of oxygen at birth and he was then ventilated, to which is where he slowly but surely started to improve his condition.”

Tommy is due to have another spinal surgery to have his C1 fused to the base of his skull, a common surgery for people with dwarfism due to the way his bones have formed.

Tracy said: “This is due to be a seven plus day stay at Great Ormond Street Hospital for Children in London and the hospital are only able to guarantee one parent accomodation.

“With Tommy’s tracheostomy cares and mobility needs, he ideally needs a second adult to be with him who is fully trained in his cares and needs.

“But we need to raise the funds for this to be able to cover the cost of accommodation, food and travel. Having a second adult with us would also provide one to have a break for a short time.”

If you would like to make a donation visit www.gofundme.com/f/accomdation-transport-for-operation