Rylan's Fight For Sight

Friday, March 2, 2012

A friend of mine commented that I hadn't updated Rylan's blog lately and I realized that I have been so busy with life that I honestly haven't had time. We have had some illness in our family and I have been so busy dealing with that, that I have not had time or the energy.

Rylan is his usual happy self these days. I couldn't have said that a few months ago. But I can now and love to hear that laugh he gives as if he is in on some joke that we are missing. Everyday he says or does something that amazes us or surprises us. Tonight as his Mom was helping him eat he wanted to do more of the scooping by himself. Alicia does hand over hand feeding and usually after he has put the spoon to his mouth he lets go and then grabs it again when the spoon has been refilled. Tonight he was not letting go and trying to discover just where this yummy food was coming from. As he was scooping his food Alicia was saying scoop. All of a sudden Rylan starting laughing and starting saying SCOOP as they were scooping up the food. Another new word. It sometimes takes a while to teach him a word and then you think he might not remember it, but somewhere down the road he will blurt it out.

I sometimes wonder if he has the whole English language in there, stuck somewhere just waiting for the person with the right key to come along and unlock it. To set him free from his Autism. As I have said before his Autism reminds me of a curtain that he sometimes peeks out from and we see the real little boy that is hidden back there. We don't want to lose this
Rylan just set him free from his curtain. To be able to understand him, to teach him. Sometimes I feel like the Blindness is second to the Autism. I was thinking the other day how you teach a blind child by touch and sound. With Rylan he hates texture and doesn't like you to hold his hand and touch things. He does love sound. He loves to listen to voices and to music. Some music he loves others he will tell you "NO" and "STOP" showing his displeasure. He loves to listen to movies and cartoons. He will try and imitate the voices and laugh out loud when he gets it right.

The other day Liz from Community Services brought Alicia his registration for Kindergarten. Ryan and Alicia had longed for and dreaded this day. Longed because he would do what all little boys do, go to school. Dreaded because if he doesn't like something he can be quite challenging. Only time and Rylan will tell us how it will go.

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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