BiographyReuben was born via a planned caesarian section after a relatively normal pregnancy.He struggled to breast feed, often falling asleep and disliking loud noises. He didn't reach his milestones as his other two siblings had. Health visitors and one GP didn't take my concerns seriously.
I was referred by one GP but then dismissed in A&E. He was looking worse and getting thinner and at the next visit the consultant discovered he was in heart failure and close to death. We were rushed to Glenfield and after heart medication and 6 weeks of tests he was diagnosed with the rare metabolic Pompe disease.
From here it was a rollercoaster ride. He started a drug infusion therapy treatment which although it kept him alive didn't work as well as hoped.
He contracted pneumonia and ended up in Birmingham Children's Hospital and had to have a tracheostomy and then eventually was ventilated following an operation for a gastrostomy button.
He spent almost 3 years in Glenfield, Birmingham, Queens and Derby hospitals before coming home after having to find suitable housing with a package of care to support us at home.
We have had many crises with his health but despite this he is a very strong, brave boy ( 6ft 2") who although non-verbal communicates with his thumbs. He attends a special needs school three days a week and really enjoys interacting with the other children. He enjoys going out, cuddles, massages and watching television.
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