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Diagnosis as a babyOur Stories

Ben M

By December 22, 2021June 22nd, 2022No Comments
Julia & Ben

May 1992

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.

Ben spent 28 days in the Neonatal Intensive Care Unit. In his first year he had over 40 paediatric appointments as well as music therapy, speech and language therapy, occupational therapy, specialist equipment and community nursing.

By the time he was 15 he had 18 hospital admissions, all the regular therapies, specialist wheelchair and vehicle, home adaptations and much more.

Ben went to a special school and 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.

With Ben’s disabilities I wasn’t able to work. The impact of that was huge and affected the whole family. Alongside the implications of not working, having a disabled child is very expensive. Financially it was hard.

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.

Since Ben was born all I wanted to do was fill his life with good experiences.

Ben’s mum, Julia