Rylan's Fight For Sight

Saturday, September 10, 2011

Kents Beach

Rylan woke up very early this morning. He new that he was somewhere different. Even though he had his comforter and his cars sheets, it was different. Mommy and Daddy and him had come to visit Grandma and Grandpa at their cabin that they rent every year. He was out of his routine. When Daddy went in he was crying but as soon as he heard Daddy's voice he stopped...There was no going back to sleep though. Daddy put on his movie Finding Nemo and settled him down. Rylan loves to listen to movies. Especially movies with funny voices and singing. Grandma got up and made his favourite breakfast and they played for a while. Mommy wasn't up yet and they had some cuddle time. A little later Mommy got up and they went up to the store. First store was okay but when they hit Walmart it was a different story. Rylan was getting tired and hungry. Rylan eats every two hours to keep his blood sugar up. If his sugars aren't kept up he can have a seizure. He was not happy to be in Walmart and was letting pretty much everyone know it. Finally he settled down and he was happy walking holding on to the grocery buggy. It must be very strange pushing the buggy and not knowing where you are going because you are visually impaired. After the store it was off to visit Rylan's Great Great Auntie Lil. She gave him pudding. He loves pudding. As we were leaving Auntie Lil gave Rylan a donation for Rylan's Fight for Sight. A $1000! We were so appreciative. Auntie Lil said that she had prayed for Rylan every night since he was born. She had prayed for a miracle and helping to send him to China seemed to her was the answer and if she could have a part in this she would. Later after we got back to the cabin Mommy put Rylan into his Mr. Turtle Floater. Rylan loves the water. He will stay in it for hours. Rylan has no fear in the water. I often wonder if he would be shocked at the difference in size of the Ocean or his little pool at home. After a while he started to shiver so time to get out. Grandpa and Daddy had gone fishing and were home. They caught a ling cod so that would be supper. Supper done it was time to go and catch the ferry to get back into his regular routine.

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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