Friday, December 16, 2011

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.

Saturday, December 10, 2011

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!

Saturday, November 19, 2011

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.  

Tuesday, November 1, 2011

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.

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.

Tuesday, October 18, 2011

This last weekend was the bottle and Penny drive for Rylan's Fight for Sight.  Pam Duffy a friend of mine took on this huge event.  She arranged all the bags and pick ups and all the thousand little things that need to be done to make this a success.  People started dropping their change off to me almost immediately, as soon as the posters went up and word of mouth got around.  It was jaw dropping.  I have to say that I was so humbled.  The day before the event Jeannie and I went to the Bank of Montreal and had a look at the new change counter that they had there.  It is so much fun.  You put the change in and the machine whips the money around and counts it.  No more counting and rolling for this girl!  The day of the bottle drive we couldn't believe how many people stopped to drop off cans and money.  Rylan the star of the show kept smiling and I do believe showing off a little.  One Dad came by with his boys with some cans and he explained to Alicia that, that morning he had read the boys Rylan's story and explained the best he could about all of Rylan's diagnosis.  Each of the boys handed Alicia some money.  Alicia said they were just the cutest little guys.  At the end of the day all these wonderful Volunteer's and the community had helped us raise over $1700.  People are still dropping off change and asking when we are going to do another bottle drive.  Pam said after Christmas.  So please everyone after Christmas remember us.  We also still have a can up at the Gibson's Bottle Depot, so if you want you can just drop your change in the can if you are recycling your bottles there.  We truly appreciate it.  
Rylan's Therapists were at the house again yesterday.  As usual the little guy never seems to amaze them with his newly acquired skills.  He is walking by just holding on to one hand now and he is so much more curious.  The visitors took Rylan to meet his new Principal that he will be having at Cedar Grove next year.  Rylan was quite curious as to who this new person was.  It just so happens that the Principal has two Grandchildren with special needs.  One is Visually impaired and the other one has Autism.  I think Rylan will have a friend indeed.  While they were there the recess bell went.  All of a sudden there was a wave of children coming from every which way.  Cohen hid behind his Mom but Rylan Ang told me, Had the biggest smile on his face.  He loved all this noise.  This is a far cry from the scared little boy of a few months ago.  Oh how far he has come.  After the first kids went back to school the special needs kids came out to play.  They were quite taken by this new little face.  Rylan was having a great time listening to the chatter and the questions they were asking.  Some how I think this little boy of ours is really going to like school.  I think we need not worry if he will like it.  

Monday, October 10, 2011

Thanksgiving
It was our Canadian Thanksgiving this weekend and I had everyone over on Sunday night for our big dinner, as my Mom, Rylan's Great Grandma was here to celebrate with us.  I love Thanksgiving as I think it is a wonderful day filled with family time and good food.  
Everyone arrived it seemed at the same time, which makes my house a little chaotic and noisy.  Rylan was hungry and so I quickly made his special dinner.  Ground up turkey, potatoes, sweet potato, peas, corn and gravy.  Alicia tried to feed him  and it was a no go, then Auntie Ang tried and still a no go.  Ryan thought that it was because he wanted him to feed and still Rylan's little nose went up in the air.  This supper was not what he wanted.   We were perplexed.  Suddenly Auntie Ang came out of the dining room holding the cranberry jelly and added some to Rylan's dinner.  If you could have seen his face.  He got the biggest smile and just opened his mouth and ate.  It was hilarious.  I have to say that I would not have believed it if I hadn't seen it.  
Now I know I have written about how much Cohen and Rylan care about each other and how the little cousin has been a true God send to Rylan, but on Thanksgiving I witnessed something that I will never forget.  Rylan and Cohen were sitting on the couch beside each other, watching their favourite TV show.  Rylan was doing his rocking thing and Cohen was occasionally looking at him.  He seems to check on Rylan to make sure he is okay.  Suddenly Rylan reached over and gently grasped Cohen's hand.  I was amazed.  Cohn just looked over at Rylan, then looked at his hand and just continued to watch his TV show as if it was a normal event.  Rylan held Cohen's hand till the end of the show.  I felt almost breathless.  I felt like I had witnessed a small miracle.  Rylan seems to be reaching out more and more.  I think I see him more and the Autism less.  I have much to be Thankful for this Thanksgiving.  

Thursday, September 29, 2011

The Stairs
The stairs in Ryan and Alicia's house has always been a concern.  Everyone is always worried that Rylan will somehow get out of his room at night and fall down the dreaded stairs.  Since he doesn't walk and he bum scoots everywhere, Angela or TeTe as he calls her decided that it was time to tackle them.  So she let Rylan bum scoot to the top stair and then guided him, by making him sit and take one step at a time, till she got him to the bottom.  He loved it and really seemed to understand what was going on.  She got him to do it a few more times and was feeling confident that if necessary that he would be able to do it if he somehow got out of his room.  When Alicia got home that day and Ang told her the days events Alicia laughed and told her that she had also been working with him.  No wonder he seemed so sure of himself. 

I would like to remind everyone about the Bottle & Penny Drive on the 15th of October at Gibsons Elementary School  It starts at 9am and goes till 2 pm.  There will be coffee and Muffins.  If you can't make it out and you have bottles to donate just give me a call at 604-886-3684.  
As an update we have now passed the $5000 mark.  Thank you to everyone who has donated.  We couldn't get to China without you!

Thursday, September 22, 2011

Rylan's weight
I don't think that I mentioned in any other the other blogs that a few months ago we were terrified that Rylan would not make it to his 5th birthday.  He was so thin and sickly looking, and we could actually count his ribs. Rylan's Endocronoligist suggested that they see a Dietitian but they wouldn't be able to see her for 4 months.  We honestly did not know what we were going to do.  You see Rylan does not chew and most of his food must be pureed.  He had gotten so he wasn't eating much at all.  I then got this  idea what about a Magic Bullet.  I had seen them on TV in the infromercials and Wendy and I had gotten the Baby Bullet for Ang and Dana for their little guys, why wouldn't this work .  Ang pretty much throws anything and everything in the Bullet and he loves it.  Suddenly food was fun and and interesting.  He now demands his food.  He has had Pizza put in the bullet with milk, Meatloaf and veggies, Steak, Chicken you name it, he loves it.  The funniest I think was Ryan and Alicia had always dreamed of taking him to McDonald's and getting him French Fries.  Well it wasn't McDonalds but they got KFC on their way back from Vancouver with Fries and Gravy and decided to put some of that in the bullet.  Ryan said the look on his face was hilarious.  He couldn't give it too him fast enough.  He was furious when it was all gone.  So yesterday Alicia and Angela with the two boys headed for Vancouver to see the Dietitian.   They were so excited to tell everyone.  Rylan had gained 7 1/2 pounds.  He had gone from the 10% for his age to the 50%.  Almost perfect.  We sometimes tickle him and tell him he has a little buddah belly.  He laughs, probably because we are tickling him.  He seems to be a much more happy boy.
Yeah Rylan!

Tuesday, September 20, 2011

 Melanie and Rylan
Today Melanie one of Rylan's therapist came to see him.  He seemed happy to see her.  
She wanted him to play a game where he took some lids out of a container.  She showed him what to do and to her amazement he started taking the lids out and throwing them around the room. She then wanted him to put them back  in the container, and once again he surprised her by doing it.  He did it again and again, having a great time.  He liked this game.  Melanie told Auntie Ang that he hadn't just improved in the last few weeks, Rylan had come up a whole level.   She said that what ever everyone was doing, to keep it up as it was really working.  He was much willing to play.  This is what we had all been hoping for.  Do you think those kitchen dance parties and the rough housing with Cohen had helped?  I certainly do.  I see Rylan coming out of his shell more and more.  Before he didn't want to co-operate and do any play time.  Now he seems to look forward to it.  It was a great day and heartwarming to hear how much he had improved.  It's the little things that makes our hearts sing.  Think what he could do with some improvement of his sight! 
It's Official our first fundraiser is going to be at Wheatberries on October 27 at 7:00 till 10:00.  The price of the tickets is $10 and that includes Coffee and a Dessert.  Not bad for a yummy treat.  Also we will be having a Silent Auction and a door prize.  We are hoping to have entertainment as well.  Hope to see you all there.  
Just an update to let you know that as of yesterday we a total of $2225 in Rylan's trust fund.  Thank you everyone that has donated.  Thank you from the bottom of our hearts.  

Thursday, September 15, 2011

Fundraising
Last night we had our first Fundraising meeting.  So many great ideas came out.  Pub nights, Dessert nights, Golf tournaments, a Dinner and dance.  Silent Auctions , 50/50 draws and on and on it went.  I felt so excited and blessed that these ladies really cared.  Our man of the hour Rylan was there and putting on quite a show.  He even flirted with one of the ladies.  We were stunned as this is not like him at all.  He usually acts up when there is lots of talking and noise but he had actually bum scooted over to her and pretty much planted himself on her.  Hmm wonder if it is because she's the manager at Wheat berries and smelled of sweet things.   Cohen and Rylan were even playing ball.  In fact Rylan was stealing a ball from Cohen and teasing him.  One wonders how a Visually impaired child can even find the ball but he seems to have a sense of where things are, either by smell or by sound.  He was getting great delight in making Cohen whine for the ball and then throwing it away so he couldn't have it. It was so wonderful seeing him interact and be a typical 4 year old.  To date we now have $1825 dollars thanks to some Pay pal donations and a anonymous donation at the bank.  Thank you from the bottom of our hearts.  

Monday, September 12, 2011

Wednesday night we are having a fundraising brainstorming event to discuss some ideas for Rylans trip to China. We have had several calls from people wanting to know what they can do to help fund raise.  I have realized that more and more people are wanting to jump on board to help.  It is amazing.  Earlier today an older lady phoned the house to say she wanted to donate but didn't understand the www. stuff. She wanted an address to send a cheque to.  It was quite touching.  I promised her when we get back that with Christine Woods help we would put an article in the paper telling her how it went in China.  She said that, that would be more than enough for her.  She then went on to say that she was donating because two years ago she had lost a Grandchild at 20 hours old.  She wondered if the baby was like Rylan.  Sad! I would also like to Thank the people who have already donated!  We now have in hand a grand total of $1665.  That is not counting donations that people have promised.   If you live on the Sunshine Coast stay on the lookout there are going to be bracelets for sale in blue that have Rylan's Fight for Sight on them.  Thank you to Kim Moore for arranging that. 
Have a great day


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. 


Friday, September 9, 2011

Today is very special in our Campaign to get Rylan to China.  Christine Wood of the Coast Reporter did an article on Rylan and his Mom and Dad. When I read the article and realized just how well Christine has explained Rylan and all his medical conditions I broke down in tears.  When I shared it to facebook we were astonished at the reaction.  Thank you everyone who immediately donated, I can`t tell you what this means to us.  We will get to China and maybe even sooner than we dreamed. 
Thank you from the bottom of our hearts.   And please no matter what size  of a donation you can make, it makes a big difference.
Love
The Johnstone Family

Wednesday, September 7, 2011

A day with Rylan and Cohen


Rylan's days and nights quite often get confused as with many visual impaired children.  My son will often tell us that Rylan had been up partying all night.  Which means he has gotten out of his bed and bum scooted all over his room creating havoc for the morning.  Sometimes he has pulled everything out of his closet and other times pulled out every piece of furniture that his little body can.  Ryan and Alica had to take out most of his things because they were afraid he was going to hurt himself.  He actually did pull the book shelf down.
Rylan`s Mom and Dad both start work very early and so his first Caregiver arrives at 5:15 am to take the early shift and  by then Rylan has had his first Medication of the day.  Auntie Cath as she calls herself waits till Mom and Dad have left and then she will sneak upstairs to see if Rylan is awake or sleeping.  If he is awake she will tuck him in with his favorite blanket and then whisper, too early yet Rylan have a little nap.  Sometimes it works and sometime he will loudly say NO! UP!  On those days he will be up and want a snack.  Usually fruit.  Then  it's cuddle time.  Breakfast is always Oatmeal and applesauce.  Yogurt and sometimes if he's really hungry there will be more fruit.  Bath and more kids TV shows round out his morning.
It's now Rylans favorite time of day.  It's almost Nine and Auntie Angela and Cohen will be here soon.  Auntie Angela is Rylan's caregiver from 9:00 till Mommy gets home at 3:00.  The dogs will start barking and Rylan will starting clapping and smiling because Cohen will be coming through the door any second.  He loves his Cousin Cohen who just turned one.  On many levels they are the same age with all Rylan's developmental delays.  No matter there is fun to be had.  Auntie will come through the door and he will hear Cohen's little footsteps.  A day with his cousin means absolute acceptance. because Cohen loves Rylan as he is.  Cohen will push and tug and pull on Rylan and he will laugh big belly laughs.  Auntie will have Dance parties in the kitchen holding on to Rylan because although he can stand he can not walk without someone holding him.  There will be tickling and rough housing and all the things that a little boy needs.  Cohen has changed Rylan in as he has taught him how to play and how to be with another child.  There is lunch and sometimes they go to the park.  Before Cohen Rylan didn't like the park.  The sound of the other children scared him.  At Cohen's birthday although he couldn't really take part he laughed and clapped his hands with excitement and he really enjoyed himself.  Soon it will be 3 and Auntie and Cohen will be leaving but it will start all over again in the morning because Auntie will be back and Cohen will be back to love his cousin and just be with him.   




 

Friday, September 2, 2011

Why China

A few weeks ago while once again researching Stem Cell Infusions in China I started going on my SOD/ONH facebook sites looking for other people making comments and I happened upon a post by a lovely lady named Brenda Campbell.  She was talking about going to China.  I stopped dead in my tracks and made a comment to her.  She immediately messaged me.  I was enthralled.  She explained everything that was going on with her daughter and how she had fundraised to get enough money to go to China.  Next Glynda and Paul Arnold messaged me to talk about taking their little Grandson to China. How they had fundraised  because like us they couldn't afford this without help.  I got an excited feeling in the pit of my stomach. Could we do this?  All I posted was China?  on facebook and I got so much positive feedback that honestly I couldn't believe it.  I went upstairs and said to my husband Rob, Alicia and I  are going to take Rylan to China!  His reply was simply, Okay.  I have never made such an impulsive decision in my life.  I then phoned Alicia and told her pretty much the same thing.  Funny none of us even thought of not going.  We know that if we don't do this we will regret not trying.  I read a quote on one of the blogs that said" I don't want to be in my dying bed and have to think that we didn't try everything.  I guess China is our everything.  It's our only recourse because there really is no other medical treatments.  
If you have an extra few dollars that you could donate we would appreciate it.  Not for us but for our very special little man Rylan.  
Thank you Alison