Harvey was born a poorly boy, spend a month in scbu, he started life with pneumonia. We had the chromosome problem diagnosed when harvey was in mums tummy, as his big sister also had problems. So we knew that he may have problems too. Harvey still enjoyed life, but started falling behind with nis development, so started at a special school nursery, at 3 he started having seizures and was diagnosed with epilepsy, then on December 27th 2009 he had a very long seizure, after 3 days in hospital it was revealed hed suffered a stroke, on the right side of his brain, which effects the left. He was placed in a coma to let his brain rest for 6 weeks. On waking him, it was clear he could not breath for himself, after more test it showed the stroke had left lasting damage, subglotic stenosis and vocal chord palsy. Which ment his vocal chords where paralysed and his airway had collapsed, so for him to breath he needed an emergency tracheostomy, also had a gastrostomy at the same time to be able to have special feeds. We spend a long 6 months in addenbrooks hospital recoving and mummy learning to care for him. We are now 5 1/2 years down the line and now and hes had reconstruction surgery on his airway twice, jan 2014 and jan 2015. 1st attempt failed, 2nd is doing well now awaiting scoliosis surgery due to the stroke effecting his spine. And are hoping he will then learn to walk again. And hopefully have his trachi out.