Ryan was born in July 2003 and we thought him to be a healthy little boy. He was a quiet baby, content, he didn’t try to crawl, he only rolled over at 18 months and days before his 2nd birthday Ryan started to walk. Because of the delay he was referred for tests and one came back with raised levels of ck, normally associated with the liver or muscles.
In Sept 2005 he was diagnosed with Duchenne muscular dystrophy. Looking at our gorgeous 2 year old my heart broke. Duchenne muscular dystrophy affects approximately 2500 boys born a year. Ryan’s muscles have now weakened so he no longer walks, he will lose the ability to move his arms or body from the neck down in the next couple of years and will require ventilators to help him breath as his heart and lungs weaken.
As a family we try to ensure we grab every opportunity we can to enjoy the time we have with Ryan. He is a mostly a happy cheeky little boy, although demanding at times. We refuse to live our lives with regret and although we are aware of the challenges ahead we try not to think too much about the future.
This is greatly helped by the small support network we have around us of special friends and family. Funding for rare diseases such as Ryan’s is limited and so are essential care services, this is why we are fundraising. It is so important and it means so much that people support Ryan.
Setting up a family fund, like Ryan’s Research Fund, is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.