Rylan's Fight For Sight

Monday, October 10, 2011

Thanksgiving

It was our Canadian Thanksgiving this weekend and I had everyone over on Sunday night for our big dinner, as my Mom, Rylan's Great Grandma was here to celebrate with us. I love Thanksgiving as I think it is a wonderful day filled with family time and good food.

Everyone arrived it seemed at the same time, which makes my house a little chaotic and noisy. Rylan was hungry and so I quickly made his special dinner. Ground up turkey, potatoes, sweet potato, peas, corn and gravy. Alicia tried to feed him and it was a no go, then Auntie Ang tried and still a no go. Ryan thought that it was because he wanted him to feed and still Rylan's little nose went up in the air. This supper was not what he wanted. We were perplexed. Suddenly Auntie Ang came out of the dining room holding the cranberry jelly and added some to Rylan's dinner. If you could have seen his face. He got the biggest smile and just opened his mouth and ate. It was hilarious. I have to say that I would not have believed it if I hadn't seen it.

Now I know I have written about how much Cohen and Rylan care about each other and how the little cousin has been a true God send to Rylan, but on Thanksgiving I witnessed something that I will never forget. Rylan and Cohen were sitting on the couch beside each other, watching their favourite TV show. Rylan was doing his rocking thing and Cohen was occasionally looking at him. He seems to check on Rylan to make sure he is okay. Suddenly Rylan reached over and gently grasped Cohen's hand. I was amazed. Cohn just looked over at Rylan, then looked at his hand and just continued to watch his TV show as if it was a normal event. Rylan held Cohen's hand till the end of the show. I felt almost breathless. I felt like I had witnessed a small miracle. Rylan seems to be reaching out more and more. I think I see him more and the Autism less. I have much to be Thankful for this Thanksgiving.

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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