Rylan's Fight For Sight

Sunday, October 30, 2011

Wheatberries.

Last Thursday we had our 1st official Fundraising event, For Rylan's Fight for Sight. To say it was a success is an understatement. It was a sellout. We could have sold at least 30 more tickets. It was an amazing night. The owners of the Coffee house where we had the event were extremely accommodating. They had everything set up so that when we arrived all we had to do was set up our Silent Auction. Thank you Andrew and Leslie. Our wonderful Fundraising team was there and pumped. I could tell that this was going to be a good night. People started arriving right on time and they were treated to beautiful desserts and wonderful coffee. Kathy and Paul were our entertainment and they did not disappoint. Kathy has a wonderful voice and Paul plays a mean guitar. Rylan was loving the music. It's his favourite thing in the whole world. He was bopping his little head to the beat of the music. He was most upset when they stopped for a break. Cohen was just as enthralled. He was trying to sing along with Kathy. She told me later that she had to look at something else as every time she looked at him she started to laugh. Maybe Cohen is going to be a singer. Grandma got Rylan up to dance. He has this cute little thing he does with his foot. I can't do it but he has a very different dance move that makes us all laugh. He was quite a card and he didn't disappoint everyone.

Karen Webb made a presentation to Ryan and Alicia. Seems her Grade 1 class had been having penny drives and had raised $170 for Rylan's Fight for Sight. I don't think there were many dry eyes in the room

thinking of those little ones, raising money for another little one. I do believe that they could teach us something about generosity and selfless love and acceptance. When we pulled the 50/50 draw April Seward had won and she donated the money back to Rylan's cause. Thank you April.

The Silent Auction was a great Success. We appreciated all those bids. Thank you to everyone one who bought the items. We can't do this without you. So I know everyone is wondering how much we raised. Well we raised almost $2500. Rylan has about $12,000 in his Trust Account. Amazing!

Thank you Everyone from the bottom of our hearts.

Our next event is November 17th at the Lighthouse Pub. It is a Burger and Beer night. We will be having another Silent Auction and 50/50.

Hope we see you there. China is getting closer and closer.

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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