My Story

I met Luke at my nephews christening and was amazed that this kid despite all the difficulties he had physically still run around playing and enjoying himself. When other kids fell they would run to their mum for comfort, when Luke fell he picked himself up and carried on, falling was an everyday occurrence for him and he brushed off the pain and wouldn't let it stop him enjoying himself.

Luke was born after a normal uneventful pregnancy. When he was born he was much smaller than his older brother and had a rash over his body but otherwise seemed healthy. After a few hours one of the midwives thought he should be checked over and at that point it was discovered he had low platelets and was taken to NICU in the middle of the night. 3 days later he was diagnosed with congenital CMV. He had microcephaly and calcifications on his brain. Luke spent the first 6 months of his life in and out of hospital. At 4 months old he was diagnosed with spastic quadriplegia cerebral palsy. 

At 6, Luke has just joined a mainstream school. He can walk, but has difficulties swallowing, is non verbal and is starting to show some signs of hearing loss. However he is the most determined, cheeky child ever and continues to defy the odds!

CMV (cytomegalovirus) is a normal virus which causes cold like symptoms in healthy adults. However in pregnant women it can cross the placenta and affect the foetal development. The stage at which CMV is contracted will depend on the potential effect it has on the baby. In Luke’s case CMV was likely contracted around the time of conception. CMV is leading cause of non genetic hearing loss in children, it causes blindness, seizures, cerebral palsy, intellectual disabilities, the list is endless and the range is huge-from no symptoms to death. It causes more disabilities than foetal alcohol syndrome, Down’s syndrome and spina bifida.

This young lad really inspired me, no matter the obstacles infront of us we can still pick ourselves up and carry on. I will be running the London marathon virtually and 6 weeks later will run the Cork marathon to raise money and awareness for CMV. When it gets tough I can think of Luke and know he would just pick himself up and  carry on just like the first time I met him.