Rylan's Fight For Sight

Thursday, July 26, 2012

I have made the last installment on Rylan's Stem Cell therapy. It was exciting and scary all at the same time. Exciting because we have managed to raise the Stem Cell treatment money with all of your help and Scary because Alicia and I are not good fliers and it is a 16 hours flight. Scary because at the end of the day we have hopes of how the Stem Cells will help Rylan, but we also know that there is a possibility that it won't give him the sight we pray for.
We still need to raise a little more money. We are still doing the ongoing bottle drive and although when we take bottles in we might only get $20 it all adds up. Rylan is still getting the odd donation which really helps. A big Thank you to Rylan's Great Auntie Andrea and Uncle Angelo, for the very generous donation.
Rylan is doing really well with his seizures. He is still having the odd one but Ryan & Alicia seem to handle it quite well. It's amazing how far he has come in the last year. He is standing more, talking more, eating more pureed foods and he is even telling us sometimes about needing the potty. His use of his walker is fantastic. He still loves it.
Last Saturday Rylan was the ring bearer at his Auntie Angela and Uncle Brandon's wedding. He walked with his Mom Alicia using his little walker. When they came over the grass there were lots of tears shed. He and Cohen looked Adorable in their little suits. All of us were so proud of him. He had the biggest smile on his face. I think he knew he made a big entrance. It seemed to make the wedding just a little more special.
Come September when Rylan starts school I expect we will see even more changes, as he gets his first real independence away from his very protective family. I think the other children will really help him with his speech. I hope that he makes some really good friends there.
Today when I talked to Angela she said that Judy and the boys were going to the Water Park. I think Rylan will really love this as he loves to play in the sprinkler. Rylan is getting so much move adventuresome. Can't wait to see how the Stem Cells will help him.
We hope everyone is having a great summer. Thank you all for all you have done for Rylan. Please keep him in your thoughts and Prayers.

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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