Jenson has a form of muscular dystrophy, but has not yet received an exact diagnosis. Genetic testing in February 2019 proved inconclusive, and Chloe and Rikki are now waiting for an appointment for a muscle biopsy. They say they are aware they may never get a diagnosis. Until very recently, Jenson was unable to walk and got around by crawling or using his knees to shuffle along the floor. He still cannot climb stairs, and has an R82 Mustang walker to get around and to strengthen his legs, but only likes using it outside.
The condition seems to mostly affect Jenson’s calves. He is learning new things all the time and improving, but still finds many things difficult. Jenson is globally delayed and very dependent on his parents. He cannot talk other than to say ‘Mum’.
Chloe says:
Every day is hard, and having a disabled child is tough. It’s like grieving for a child you know you will never have. I’m not only Jenson’s mum, but I’m his carer, too. I make sure he has what he needs and that he always knows he’s loved. I wouldn’t change one thing about Jenson, though. He is our perfect baby boy. We have tough days, but we always manage to get through them.
At present, the family are living in a first-storey two-bedroom flat. The entrance to the flat is up a steep flight of stairs, which Jenson has to be carried up dangerously. There’s no parking, and very little room for all of Jenson’s equipment. His R82 Mustang has to be kept at his grandmother’s house six miles away.
Before Jenson was diagnosed, Chloe and Rikki had planned on renting their current property while looking for somewhere to buy. They placed an application in summer 2018 for local housing, but were not allocated a property. Initially, the family were placed as “bronze banding” – the lowest-priority category – which Chloe appealed. The family have not received a home assessment. Eventually, late last year, they removed themselves from the waiting list, due to the stress it was causing.
In 2018, the family also applied for DLA (Disability Living Allowance) for Jenson. Chloe wasn’t offered any help completing the form, even after contacting Citizens Advice, but did receive some assistance from Jenson’s support workers in answering some of the questions. The application was accepted, but the DWP wouldn’t consider the mobility component of the allowance until Jenson was three, as is its policy. Chloe had to drop working days due to Jenson and his needs, and most of her outgoings are primarily spent on Jenson. He is still dependent on baby milk, his diet is different to that of other children his age, and he’s still in nappies – all costs that add up. Receiving the care component of DLA helped, but Chloe was still left with very little at the end of each month.
As soon as Jenson turned three in August, Chloe applied for the mobility component of DLA. This took four months to come through, and once it did Chloe was told it would not be backdated to the date she applied. It was only after making a complaint that this was revised. Chloe can’t afford to give up work, but is aware that as Jenson gets older his needs will be wider and funds will be needed for additional equipment.
Chloe adds:
I found applying for Disability Living Allowance incredibly difficult. The form is very detailed and specific, and I was really upset and stressed as it was just after Jenson’s diagnosis. I wasn’t offered any help completing the form. I have to say I think it’s ridiculous the mobility component wasn’t considered until Jenson was three. Jenson already had a diagnosis of a muscle-wasting condition.
Many people generally need financial support to assist the needs to their disabled children, perhaps from dropping hours in work or buying equipment they need. Everyone is different, and I feel like there needs to be less judgement and a more sympathetic attitude.
