A MUM in Melksham has contacted major supermarkets, campaigning for the children’s seats in shopping trolleys to be more accommodating of babies and children aged 18-months to six years old, who have disabilities.
Rachel Mead has a 16-month-old baby named Drae who has two variants of TBCK-related ID syndrome, a rare degenerative brain disease that also affects his central nervous system. Rachel told Melksham News the two variants have never been seen in the same person before, making Drae’s illness very rare.
She said Drae is one of only eight babies in the UK with the illness; he is unable to support his head properly and cannot comfortably sit in the baby seats or disability seats already provided in shopping trolleys.
Following a Facebook post Rachel shared about the difficulties of shopping in supermarkets, other parents came forward who are all in similar situations with their children who have different disabilities. This has led her to make contact with Asda, Tesco, Sainsbury’s and Morrisons to start the campaign for a more accommodating seat to be designed.
She said, “I am now at the stage where I can’t go shopping with him on my own because I can’t push a trolley and his special pushchair and he can’t go in the baby seats anymore because he’s too big for them. The next stage up is the disability seats which are for children and adults who can hold their head and Drae hasn’t got any of that. I feel that there’s something missing in the market for that and to help parents in my situation.”
Thinking about how the seat could be designed, Rachel said, “I’ve got a couple of ideas. I think it could go across the whole of the back of the trolley so babies can lie in it. I feel that changing the seats is a minor thing to be done, to help thousands of people in my situation.
“I was in Tesco a couple of weeks ago and Drae was screaming the whole way round. He was in the seat, he’s getting too big for the seat and we think he’s got a problem with his hips, so it was causing him pain. There was a couple of people queuing in front of me and they ended up helping me get everything out whilst I settled him. The cashier said this is wrong and there should be something to help people with your situation. I walked out of Tesco crying my eyes out. He needs to be with me because of how complex he is, he’s got epilepsy as well.”
Rachel and others in similar situations have said they have to resort to online food shops but this comes with different challenges. She explained, “Personally, I don’t want to be stuck in my house more than I have to be just because I can’t go out because of his position. That little chore gets me out the house and not stuck in. I personally quite enjoy a food shop.”
When asked how the situation feels, she said, “You feel really isolated and it makes you feel quite lonely. I don’t want to walk into the supermarket and ask for someone to come and help me do my shopping with me. I am not that type of person, it doesn’t feel right.”
Rachel has also noticed other gaps in provision for disabled youngsters, saying, “You find there are things in place for disabilities, but there’s that gap for when your baby is not a baby any more. There’s lots of things I’ve found out about the disability world, even down to the price of a special toy for a disabled child. The whole system’s wrong.
“We didn’t ask to be put in this position, we have had the most catastrophic diagnosis imaginable and we have to fight for everything along the way and it’s just not fair.”
Alongside contacting supermarkets, to which she has so far received bounce back emails, Rachel has also contacted a local charity called Small Steps for support and plans to continue trying to make contact with the supermarkets, to campaign for change.