Charlie was born in September 2011 after a long labour with complications resulting in damage to his neck. From 3 months I noticed Charlie's head seemed flat at the back and tilted to one side. After referrals to a
consultant he was diagnosed with plagiocephaly and for the following 7 months he had regular physio to help loosen and strengthen the muscles in his neck and arm. Concentrating on the physical side for Charlie I didn’t realise he wasn’t reaching his cognitive milestones. At approx 13 months old I knew something was different, he had no sound, hardly slept and was very repetitive. No sooner had he improved his physical skills we were then under assessment for his cognitive and social skills. After 6 months of assessments Charlie was officially diagnosed with autism spectrum disorder shortly after he turned 2 years old. We thought that was it and started early intervention to try to help him achieve even the smallest of milestones.
At the age of 3 Charlie had a bruise like mark appear on his face and back which was slowly spreading. Doctors and health visitor didn’t know what it was. After failed treatments of various creams and medicines we were referred for allergy testing. We walked into the dermatologist office and he diagnosed him right there with scleroderma in July 2014. Then there was the numerous appointments, MRI scans, thermal imaging and doctors and student doctors assessing Charlie as we were told it was rare condition which affects the skin, muscles, bone and could affect his brain with no cure only treatment to prevent. Charlie began a 2 year course of methotrexate, folic acid and anti-sickeness medication along with monthly blood tests to make sure it wasn’t damaging his liver. This made him sick and his immune system weak. Winters were spent inside so he didn’t get a cold, summer protecting him from the sun's rays. Thankfully Charlie is in remission with the scleroderma and no longer requires the methotrexate but it can flare up at any time. He requires the use of a wheel chair part time as he has swelling and pain in the knees from walking or too much energetic play. All that aside he is a happy 7 year old boy, cognitively he doesn’t understand he is different and enjoys school.