How you can help two-year-old Arty who has rare medical condition get the car seat he needs

And like another child his age, Arty loves to eat to listen to stories and songs and watching Mr Tumble on the TV.

But unlike most children Arty needs constant supervision and medical help because of a rare condition called PolyMicroGyria (PMG).

And now his parents Steve and Hayley are trying to raise £2,000 for a special car seat to cater for Arty’s needs. You can visit the GoFundMe page here.

PMG is a rare condition which usually happens when a child's brain is developing in the womb during the first 12 weeks of pregnancy.

The brain is made up of a series of folds giving it that rippled effect, with PMG the brain develops lots of small folds.

Dad Steve, who gave up his job to look after Arty full-time, explained how they did not know about the condition during the pregnancy.

He said: “We don't know why or how Arty has this condition, there was no indications during pregnancy that there was anything wrong. When he was born he looked different and struggled to breath alone, he also started to have seizures in his first couple of days.

“His first six weeks was spent in a specialist unit at Kings Hospital in London. The doctors believed Arty has a genetic disorder too but they can't find out what that is after testing.

“His condition affects many aspects of development and as the brain is complex every child is affected differently.

“Arty, even though nearly three years old, can't sit up, he can't crawl, walk and he doesn't talk. He can pick up limited objects like toys and cutlery but is still practising to use them.”

Arty needs constant supervision and help to do everything, he functions very much the same as a three-month-old would.

Steve and Hayley, who live in Forge Wood, clothe, bath, feed, play, carry, exercise him and they also do physiotherapy daily to stop his muscles becoming too weak and tight.

HAVE YOU READ THESE STORIES? Here’s what Sussex Tory MPs’ have said about Downing Street parties so far | When all Covid restrictions could be lifted across the UK | Crawley mum of triplets wants to inspire women facing infertility after being nominated for prestigious GLOMAMA award

Steve added: “Arty also sees several medical professionals for all aspects of his development, neurological & physical.

“We also take him to see a therapist in Surrey who specialises in brain development and he has a daily program from these sessions.”

Arty gets weekly support from the Dame Vera Lynn Childrens Charity in Sussex, and he has been attending sessions, especially physiotherapy, with them since he was one-year-old.

Steve said: “The charity is a godsend and have helped not just with his care but also with things like applying for Disability Living Allowance.”

And now Steve and Hayley have set up the GoFundMe page to help get the specialized car seat for Arty. They hope to raise £2,000 and so far have raised £1,030.

Steve said: “Arty has grown to a size now where baby car seats, the usual rear facing ones are too small for him.

“Most forward-facing seats do not have a 5-point harness and do not have the lateral and head support needed for a special needs child. So a child like Arty can't really travel in the car safely at the moment until we are able to secure a fully safe and specialised seat.

“A normal car seat retails for around £100-£300 however a specialist car seat would be made to measure - bespoke to Arty's needs and usually start at around £1800-£2000 and that is without any necessary adaptations.

“We started trying to raise funds for Arty's car seat set up as we are currently unable to travel with him safely long distances.

“There is no support from local authority or government to help fund car seats like there is with wheelchairs, even though they are essential, they have to be self-funded.

“Helping to raise the fund will enable us to start the process of ordering a new chair for Arty so he can attend clubs, nursery, go for days out and visit extended family who all live in the North West.”

Steve added: “We've been overwhelmed and amazed by how quickly we've been able to raise nearly half already. Everyone has been incredibly generous.”

Arty's favourite activities are playing with his siblings Molly, Daniel and Margot at home. Steve added: "Covid has meant that he hasn't been able to go to many clubs like Conductive Education at the Dame Vera Lynn Charity which he loves.

"Arty also likes to go to nursery where he has made friends and likes to watch his classmates play and pass him toys."

You can donate to help Arty get his car seat here.