BATH TIME TAKES A STEP FOR JAKE
A SIX-YEAR-OLD with a rare genetic condition has taken a step thanks to some bespoke engineering.
Jake Green from Wokingham has RERE Syndrome, and joins less than 30 people in the world with the diagnosis.
The syndrome affects his muscles, so he can crawl but not yet walk — which has made it a challenge to use the bath.
Weighing 30kg and wearing age 10 clothes, Mum Rachel and Dad Jed were struggling to help him into the water.
“Jake cannot get in or out of the bath himself,” Rachel Green said, “but he is too mobile to qualify for a hoist.
“It was fine when he was smaller, but as he grew it became so difficult for us to lift him over the bath-side.”
To help solve the problem, Phil Cartwright, a volunteer engineer from Barkham designed and built a set of specially-padded bathroom steps.
This has made a real difference, his Mum said.
Jake’s condition was identified after three years with the 1,000genome research project, designed to catalogue human genetic variations and support future medical research.
The RERE gene provides instructions for making a protein critical for normal development before birth — and disruption of this can lead to neuro-developmental delays and other problems.
“We were so pleased when we finally discovered he had RERE because it meant he was likely to continue to develop rather than going downhill,” Ms Green said.
“He didn’t sit up until he was two, and is autistic, but we see such progress in him.”
Jake lives with his parents and little sister Sophie, 2.
“He is about two-years-old
mentally, so he and Sophie really seem to connect and get on well,” his Mum added.
Mr Cartwright, who built the steps, volunteers with Remap Berkshire, a charity that creates free, custom-made disability equipment unavailable to buy.
He said he inherited an enthusiasm for practical projects from his father.
“Dad had a good busy garage and I helped him make all sorts of things,” Mr Cartwright said.
“My own speciality has been furniture — in recent years I have made a bureau and several coffee tables.”
He joined the Remap Berkshire panel in 2019, with 25 like-minded volunteers who use their skills to create custom equipment for people across the county.
Panel members have a wide variety of expertise between them, including electronics, metalwork, carpentry and 3D-printing.
The engineers often work alongside health professionals
including occupational therapists, physiotherapists, doctors or Special Educational Needs staff to ensure the equipment safely individual needs.
Engineers have previously created a longreach window opener, a device for getting tablets out of a blister pack, a modification of motorised wheelchair controls for someone with limited hand and arm movement, and a special foot-rest to encourage autistic children to place their heels flat on the floor.
Many of the materials used are recycled, but some have to be bought using funds from charitable foundations, Rotary Clubs and community groups.
Although no charge is made to users, many are so pleased with the service that they choose to make a donation to facilitate projects for others.
Remap Berkshire is one of 70 county MakeAbility groups in England, Wales and Northern Ireland.