Our son Henry was born in April 2020. It soon became very obvious things weren't quite as they should be and he was admitted to hospital at 8 weeks old. We recieved the life changing news that our beautiful boy had serveral brain abnormalities and hydrocephalus. He was transferred to Sheffield Children's hospital for emergency neurosurgery and had a VP shunt inserted to relieve the pressure on his brain. Straight after surgery he was a different baby brighter, happier and engaged. The difference was astonishing.

Henry has been through so much and has many challenges ahead but with Conductive Education (CE) and Henry's determination we are seeing him achieve things we could have only dreamed possible.

Henry is developmentally delayed. He is non verbal, but certainly let's us know what he wants. He also has hypotonia and hypermobility meaning he is non mobile. Henry has since been diagnosed with macrocephaly capillary malformation syndrome (MCAP/M-CM). There is no cure for this extremely rare genetic condition and Henry is one of less than 400 in the world.

Henry gives his family and everyone he meets so much joy. He is always full of smiles and his determination is unbelievable. Henry is fully reliant on us for all aspects and has numberous aids. As a family we are set on ensuring he lives life to the full. This is why we are very keen to get him an off road wheelchair so that he is never left behind and is always with us for adventures. Henry loves whoosies and he loves being pushed fast in his off road pushchair however as his condition is an overgrowth syndrome we are very aware that he will soon be far too big for it. We're also very keen for him to continue CE sessions to help promote independence.

We're planning fundraising events the first the Cleethorpes half marathon in September. More tbc!

We would be extremely grateful for anything you could donate to Henry's fund to help make his life easier. Please help our superstar live his best life!