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Diagnosis as a babyOur Stories

Julia & Ben

By December 3, 2021June 28th, 2022No Comments
Julia & Ben

Julia’s son Ben was born with congenital CMV. Now 26, he lives in supported housing. 

When Ben was born he was surrounded by doctors, so alarm bells immediately started ringing. The doctors didn’t really know what they were dealing with. They didn’t test for CMV, and information on CMV at the hospital was at least 20 years old. The only reason he was eventually tested for CMV was down to an Australian doctor on secondment. 

“My son Ben, now 26, is in a wheelchair and needs care 24 hours a day. He is unable to speak and is completely dependent on others for every aspect of his life. He lives in supported housing and is very happy. Life is as good as it ever can be and Ben is the light of our life. But, it has been a difficult and emotional journey, and not one we expected when we first found out I was pregnant.

“Ben lived at home until he turned 16. He was a big lad and it was becoming harder to move him. He went to a boarding school in Chipping Norton where he really blossomed. The school cost £160,000, funded by the local authority. His extracurricular activities cost £100 a week which we paid for. 

“With Ben’s disabilities I wasn’t able to work. The impact of that was huge and affected the whole family. Financially it was hard. Alongside the implications of not working, having a disabled child is very expensive. Adaptations to the house including a wet room, doors widened and ramps fitted so he could access the garden. The council provided a grant of £7,500 to convert Ben’s part of the house, but the true cost was 17,500, so we had to increase our mortgage to fund it. 

“Ben was provided with a manual wheelchair, but his life was severely limited with it so we paid £7,000 for a manual one. Out of the family budget I have to ring fence money for repairs because they can be very expensive. Every 18 months the chair requires a new battery at £400 each. We have also bought a specialist car seat (£600) alongside a wheelchair accessible car. For a long time, we had a mobility car, but I felt like we were always saving towards the deposit for the next one. 

“Since Ben was born all I wanted to do was fill his life with good experiences. One time my husband added up the cost of all the things we did in a week and it was a huge amount of money. However, I’m glad we did it as I think he really benefited from it. 

“We were advised cranial therapy may help Ben because he wasn’t sleeping. Paying for that nearly crippled us at £30 a session and he would have it twice a week. Throughout his life Ben has had physiotherapy. Now that he is an adult we pay for it, but previously it was funded by the NHS. His benefits pay for other therapies, but they don’t quite cover everything.  

“The money spent by the NHS and social services on Ben must be enormous, but equally I know we have also spent a huge amount to enable him to achieve the best possible life.”

The Cost of Bens Care