When I was pregnant with Jake we lost his brother aged 4 to Leigh’s. Leigh’s is genetic. When Jake was born he appeared well and the Drs and we thought we had been lucky and he was well. Sadly not.
At 9 months he started losing skills, stopped sleeping through the night and crying in pain. We thought at first he just had a virus but he just got worse. We got in touch with Birmingham Children’s Hospital and they got a bed for him to go in for tests and monitoring. He had blood, urine, MRI and a muscle biopsy. This confirmed he had Leigh’s. He lost his ability to sit up, developed epilepsy and had repeated muscle spasms. He has now got scoliosis, dislocated wrists, hips, ankles and a knee. He suffers a lot with pain, and has to take numerous medications. His condition is life limited and we don’t know how long we will have him for. He had a peg in his tummy for all his medicines, overnight feeds, and top up feeds when he can’t swallow. He can’t keep his weight on and needs these feeds to stay a healthy weight. He has regular botox to help with the muscle spasms and dystonia.
His health has gone down in the last few years and he has a very low immune system. We have to keep away from crowded places and anyone with an infection. We try to make the most of everyday.
Through all this our gorgeous boy keeps smiling, being cheeky and enjoying life. He can’t say many words - yes, no, more, again and Blues for Birmingham City his favourite football team but he makes sure we know what he wants.