Rylan's Fight For Sight

Monday, September 12, 2011

Wednesday night we are having a fundraising brainstorming event to discuss some ideas for Rylans trip to China. We have had several calls from people wanting to know what they can do to help fund raise. I have realized that more and more people are wanting to jump on board to help. It is amazing. Earlier today an older lady phoned the house to say she wanted to donate but didn't understand the www. stuff. She wanted an address to send a cheque to. It was quite touching. I promised her when we get back that with Christine Woods help we would put an article in the paper telling her how it went in China. She said that, that would be more than enough for her. She then went on to say that she was donating because two years ago she had lost a Grandchild at 20 hours old. She wondered if the baby was like Rylan. Sad! I would also like to Thank the people who have already donated! We now have in hand a grand total of $1665. That is not counting donations that people have promised. If you live on the Sunshine Coast stay on the lookout there are going to be bracelets for sale in blue that have Rylan's Fight for Sight on them. Thank you to Kim Moore for arranging that.
Have a great day

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Rylan's Story

Rylan was born 4 1/2 years ago. We nearly lost him almost as soon as his precious life had begun. He was just 23 hours old when he had an Adrenal Crisis which sent him into cardiac arrest. He suffered a stroke and had to be resuscitated. After 10 minutes the doctors had finally revived him and he was intubated and rushed to BC Childrens Hospital. Rylan was also having continuous seizures. On arrival at Children's Hospital the doctors did not know what was wrong. It was days before they made their diagnosis of a very rare disorder called Septo Optic Dysplasia. This meant Rylan was basically blind. He could maybe see some light with his left eye and some shadows but it would be like looking through frosted glass. He had and still has no sight in his right eye. This disorder affects about 1 in 10 million children. Rylan was also diagnosed with Diabetes Insipitus and Hypopituatarism. He will need daily medications and injections for the rest of his life. Rylan was a very sick baby but to our delight he fought and regained the use of his left side of his body that he had initially lost due to the stroke. Unfortunately though, there was more bad news to come. We were informed that Rlyan had suffered a brain injury as a result of not breathing for 10 long minutes after his Adrenal crisis. They also told us that his sight would not improve and what he had then, would likely be what he would have for life. We were not happy with that diagnosis and started doing research immediately. We discovered that stem cell treatment was being done on children with SOD in China and they were having success. We knew right away that we had to get him there but there was just one thing holding us back... Money! It costs between 35-$40,000 to go and receive this treatment. So with help from friends we have started this blog "Rylans Fight for Sight" in hopes of raising enough money to take Rylan to China. We have also set up a Facebook Group where you can see some of the miraculous things that can happen with these treatments.

With love we thank you,

The Johnstone family