Parents forced to give up work after both children given devastating diagnosis

A couple whose children have been diagnosed with a rare condition which means they will not be able to walk or talk have given up work to give them 24/7 care.

Ava-Grace, three, and two-year-old Henry both have rare brain malformations which left them with visual and hearing impairments, as well as cerebral palsy and epilepsy.

The extreme nature of the complications means neither can hold their heads up, making journeys by car difficult.

Parents Tom and Charlotte from Bridlington, East Yorkshire, have both been forced to give up work so they can provide the care their children require.

Tom said: “It’s been hard. Henry has nearly died twice and Ava-Grace was in a coma for a week after having sepsis.

“Ava-Grace wasn’t diagnosed with much until after Henry was born and, for the first two months of his life, we thought he was healthy.

“Then we were told they both had the brain conditions lissencephaly and microcephaly and the rest of their diagnoses came quite quickly after that.

Henry’s lack of head support and epilepsy is much worse and is affecting his brain, causing him to deteriorate at a quicker rate.

Tom said Henry’s condition has deteriorated much faster than his older sister.

He added his children’s inability to support their own heads had made it nearly impossible to move with them by car – including making life-saving drive’s to the hospital difficult.

Tom said: “We have lots of medical appointments but using their old car seats was difficult.

“Transferring them in and out was painful for them – Henry especially would be in tears – but it also wasn’t safe as they didn’t have the right head or body support.

“We urgently needed car seats with the right support, which also have a swivel base so we could transfer both children in and out of their car seats without causing them pain.

“It also protects our backs too – we worried about what would happen if we couldn’t look Ava-Grace and Henry properly if our backs became too damaged from lifting, especially as they are both getting heavier.”

Helpfully for the couple, local charity Newlife Child and Family Support came to their aid and donated specially made car seats.

Tom said: “We were even able to make the three-hour journey to Blackpool for a holiday and we can take the children to petting zoos and farms, or even just a drive so they can feel the wind in their faces.

“Because of the car seats, we can now make memories while we can.”

Kamaljit Dulai, Newlife child and family support manager, said: “We are so glad we could help Ava-Grace and Henry.

“Car seats which can keep children safe and free from pain so they can attend medical appointments, go about normal family life and make magical memories are vital, but these can cost thousands of pounds, which is far beyond the means of many families, even before the cost of living crisis.

“At Newlife we are here to help families of disabled and terminally ill children where the lack of the right equipment means they are living in pain, unsafe, unable to do things others take for granted or denied the opportunity to reach their potential, trapped unnecessarily in hospital, or even in a crisis situation.”