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. 

16:9

Well as you can imagine there was a lot of nerves leading up to the premiering of the show
"Selling Hope"on 16:9.
We weren't sure what to expect on how Ryan, Alicia, and Rylan would be portrayed.  I happy to say we needed not worry.  They did great! Ryan did most of the talking ,but both were honest and articulate and
and I think that most people were sympathetic to them in understanding that this is their chance to make a difference in Rylan's life. I think Alicia said it best when she said she doesn't want any regrets as to everything that they can do for him.  She doesn't want to die thinking she should have done more.
Thank you everyone who watched and gave us such positive feedback.  We couldn't do this without you.

Rylan turned 5 on the 16th of January. We had Rylan's Angels for cake and a visit on his birthday and then on the 21st we had a family birthday party.  He was so excited. He giggled and ripped at the paper and really had fun with everyone making a fuss over him.  It is amazing the amount of change that we have seen in the last year.  He's gained weight, seems to be talking more but the most important thing is that he is a much happier child.  He belly laughs and really tries to play with Cohen.  The therapists really see signs of progress in speech and play. Now we are hoping that maybe this year he will walk and maybe potty train.  Those would be huge accomplishments for him that would really make a difference in his quality of life.  
We have reached another milestone in our fundraising efforts.  We are now at $30,729.  I got so use to saying we need to raise $40,000 and the other day I said to a friend, we need to raise under $10,000.  It made my heart pound.  I was elated.  Soon we will be able to say we have reached our goal and we will be off to China!
Once again I want to thank everyone who is making all this possible with support, prayers and tons of love for Rylan.  

So much has happened in the 3 weeks since I wrote Rylan's Blog that I'm almost at a loss as to where to start.  On the 17th of December so much happened that my head is still reeling.  There was the bake sale that I have to say was an amazing success.  The people who baked for Rylan were amazing and generous and kind.  I can't even begin to explain how in awe we were as a family to see the generosity.  Some ladies had given an entire day to bake for the Bake sale.  There was so much baking that the 3 tables that were set up could be refilled twice.  The people who bought were also beyond generous.  Some people didn't even buy they just donated.  We were completely blown away.  How much did we make?  We made $950 for the bake sale and another $140 for bracelets.  Thanks you Sunshine Coast for your love you have shown for Rylan.   It brings tears to my eyes. 

The next big thing on the 17th was the interview with 16 by 9.  As I told you in one of the other Blogs they wanted Ryan and Alicia to do an Interview on why they wanted Rylan to go to China for Stem Cell Infusions.  Carolyn Jarvis the Anchor of 16 by 9 and Kirk the cameraman met us at the mall and yes she is as beautiful in person as on TV.   They wanted to shoot some of the Bake sale and get some of Rylan's Angels in action.  They also wanted to get Rylan making an entrance and he did not disappoint.  He was laughing and giggling as he walked towards the tables that were set up.  He hugged and kissed everyone that came to say hi.  He especially liked Kirk the cameraman.  He kept hugging him and laughing.  He then heard his Grandpa who happens to be one of Rylan's favourite people.  He hugged and kissed him and made everyone laugh and smile to see the joy on his face when his Grandpa picked him up.  Wendy and Cliff Moss came to present Rylan and Alicia with a Cheque from the Lion's Club for $500.  They had just come from selling trees from the tree farm and Cliff said they were wet but we got pictures of them and so did Kirk. Maybe they'll be on TV.  I then moved away from the action with Carolyn and we chatted about Rylan his diagnosis and his challenges.  She seemed to really want to understand all his problems.  She then wanted to go back to Ryan and Alicia's home to do the Interview.  Kirk was really taken with the yard hoping to see a Bear or the Deer that Ryan had told him about.  Well there wasn't to be a Bear sighting but a Mama Deer and her Fawn showed up to be filmed.  Hmm wonder how they will fit in with the story.  Kirk spent a lot of time setting up his equipment and Carolyn asked questions.  Rylan was getting hungry and it was time for his lunch.  Rob and I took him in to the kitchen and fed him.  I could see that Ryan and Alicia were doing  a really good job of explaining and answering all of Carolyn's questions and thought this would be a really good time to keep Rylan busy by taking him to the park.  Grandpa, Rylan and I and two of Ryan's dogs went across the street to the Accessible Playground at Cedar Grove School.  We pushed Rylan on the swing and played with him there until we were cold and I needed to get back to the Bake Sale.  We took Rylan back across the road to Mommy and Daddy and Rob and I headed back to the Mall.  When I got back there I was shocked that there was very little left of all the baking.  It was an amazing sight to see how much had been bought.  

I just found out a little while ago that Rylan's segment on 16 by 9 will air on January 14th at 7:00 pm on Global.  I got an email the other day from Carolyn thanking us for letting them in to our lives.  I hope that they understand that we were happy to share a little of Rylan and maybe if another family sees the show that it gives them some hope for their Child. 

The Johnstone Family would like to wish Everyone a Happy New Year.  

Just a quick update to let everyone know that the TV show 16 by 9 will be filming the fundraising segment of the Bake Sale at the Mall around 10:30 Saturday morning.  Hopefully lots of people come out to watch as it would be good to show that rest of Canada how a little community can come together to help a Family reach a very big goal for Rylan.  Once again I say Thank you to everyone!  Hope to see you all there.
The Johnstone's.

I have to say that I have been so busy that I have been tardy in updating Rylan's blog.  With this being such a busy time of year and doing the fund raising life has been action packed.  Today as I write Rylan is scooting around our Living room listening to Christmas shows and chasing a ball that has a bell in it.  It belongs to a Fisher Price toy we bought when he was a baby.  Before we knew he had very little sight.  But that ball has been a lifesaver.  He has always loved it.  Before it was just a noise maker.  Now it is part of a game.  He throws it and then listens to see if he can find it again. Most times he can.  Sometimes it gets wedged or rolls behind a piece of furniture and then Grandpa or Grandma will run to the rescue.  Patience is not his strong trait.  At times he is easily frustrated. 
This morning when I was helping him dress I noticed that he follows directions much better and although he can't dress himself he is a willing participant.  He will try to get his shirt on and helps with pants.  He doesn't fight or cry anymore.  After getting dressed he grabbed my hand and then touched my fingers and then said,"Grandma's Fingers".  For a second I almost couldn't breathe he had actually said a body part and picked the right one.  He knew what he was talking about.  I wonder if he would talk more if the Autism wasn't there but it is and we Love it when Rylan appears sometimes to surprise us.  I love the days that we have him.  Not all are easy but they are Rylan's days that he shares with us.  I would not wish for it any other way.  It's funny when you watch a child like Rylan.  You value every accomplishment that much more. 
Two weeks ago Rylan gave us another scare.  He had a Hypoglycemic episode.  He had not been feeling a 100% and had, had a little bit of diarrhea.  Auntie had been there and she knew something wasn't right.  He was crying and was inconsolable.  So Alicia came home from work.  He seemed fine then and they put it down to him just wanting his Mommy.  About an hour later Ryan came home and that's when it happened.  He stopped breathing.  Ryan yelled for Alicia to get his emergency shot and starting CPR.  They gave him the shot and he started to come around.  Alicia called 911 and the Ambulance was there with in minutes.  They took him to the hospital and by then he was awake and crying.  The Doctor said with him being a little sick he had just run out of his Cortisol.  This is a very frightening event but something that Ryan and Alicia know could happen on any given day.  No parent should have to do CPR on their child but thank God they can.  You start to realize that there is no certainty in the world and that life if precious.  Our babies are precious and with children like Rylan it is even more of a gift. 
 I would like to tell you that our fundraising is going really well.  Rylan has over $23,000 dollars in his account.  China seems so much closer.  We know of a few more donations that will be coming in.  So we are very happy about that.  We were hoping to get to $20,000 by Christmas but we have surpassed that.  Now are new goal is $25,000 or more.  Watch for our Bake Sale on the 17th of December.  We won`t be there in the morning.  We are going to be interviewed by the Global TV show 16 by 9.  They are going to do a segment on Stem Cells and asked Ryan and Alicia if they would participate.  At first they weren`t sure as they knew that they would be doing both sides and we know that not everyone agrees with this therapy.  We just wanted Rylan protected and the show guaranteed us that he would be protected and nothing would be done to harm him.  The show is also going to film some of the bake sale so I hope lots of people go out to it.  We will let everyone know when the show with Rylan will air. 
The Johnstone family is hoping that everyone has a very Happy Holiday and a Very Merry Christmas!

Rylan's fight for Sight Pub Night

Last Thursday night on November 17th we had a Burger and Beer Night at one of our local Pubs the Lighthouse pub in Sechelt.  We had a 160 ticket to sell, daunting to say the least and we had to come up with Silent Auction items as well.  That's where Rylan's Angel Pam cam in.  Without his

Angel I am not sure how much of this would have gotten done. I for one felt overwhelmed.  Pam and I pounded the pavement trying to sell tickets and find these silent auction items.  Dar as usual was doing the posters and anything else we asked of her on the computer.  Jeannie has always been there doing whatever we asked.  Catt Rylan's nurse who had been there the day he had his Adrenal crisis was there helping out, making her Jewellery to Auction and Judy was around for whatever she could and would do without a thought.  These are the ladies we call Rylan's Angels.  Without them Rylan would not get to China. 

 The St Mary's Radiology Department was out in full force.  What a wonderful group of ladies!

As the night approached I was getting worried and then everything started to fall into place.  Tickets started selling, businesses starting calling with donations and other little miracles starting happening.  Some of Ryan's friends from Powell River messaged me asking for tickets.  I started to feel more confident.  Maybe we would have a good turnout. 

I have to say it was more than a turnout!  It was a Sellout!  We sold all of the tickets and got 91 silent auction items. 

The night of the 17th all of Rylan's Angels turned up to set up and make sure that everything was done.  We were so excited .The Lighthouse Pub was very accomidating the food was awesome and the staff were great.  Duane Burnett was the MC and as in Duane style he rocked.  Thank you Duane.  Candy Harrison did the music and it was great.  Thank you Candy.  But I have to say the highlight of the night was when the Slow pitch team from Powell River got up and donated $1000 to Rylan for his trip to China. One of the members  of the slow pitch team named Romy and his wife Helena donated another $500 To Ryan's cause.  Ryan and Alicia couldn't even talk, Both were speechless. Wonder if there was a dry eye in the place.

We also did a 50/50 draw.  Laurie Tyson and Rylan split a $900 pot.  Awesome!

Then after that the new owner of a business that had moved into town  "Sound Attraction" offered to donate a 32 inch TV to the first person that donated $200 to Rylan and introduced themselves.  Rain thank you for being so quick. Hope you enjoy your new TV.  I found out later that the Sound Attraction people had already donated $50 to Rylan`s cause when they had first came in.  Thank you from the bottom of our hearts.  People have asked what was the biggest donation.  Well there were a couple ...One from Medi chair.  A recliner worth $999 and a Hot Water Tank donated by Bruce Hayter worth $800.  A ring donated by Anne Lewis an Orginal Oil painting by Donna Stewart. Tools a quilt a hunting jacke,t appliances and on and on.  So many other items that were so  unbelivable. I could go on and on but just know that we won`t forget any of the generosity that was given to Rylan`s cause. 

We arent finished getting all of the money yet from all the silent auction items but we believe we have to date received close to $8000.  How awesome is that for a small community.  How do you ever pay it back.  I have come to realize you can`t! You have to pay it forward

What a great success!  One that won't be forgotten for a very long time.

How much have we fund raised. Well I will tell you.

$21,500.  

Absolutely Unbelievable. 

Thank you to All the Sunshine Coast.  Gibsons, Roberts Creek, Sechelt, Pender Harbour and Powell River.  What a great and beautiful place to live.
For those who have asked what is next so far we have organized a Bake sale on the 17th of December at Sunnycrest Mall and of course the after Christmas Bottle Drive on the 7th of January.  Please if you have any extra baking to donate let us know and please save your Drink bottles for us.  Thank you from the bottom of our hearts.
The Johnstone's and Rylan's Angels.  

Today we met with Harvey Metz the President of the Gibsons Legion.  He presented Rylan with a Cheque for $1000 for his Fight for Sight!  Thank you to all the Legion Members for their Contribution.