I’m speechless at the moment, just overwhelmed at the kindness of people. When I started the blog back in 2009 a lot of the posts involved Jono.
Jono has had a lot of health problems including kyphosis and scoliosis causing his back to be curved at a 90 degree angle. He had a spinal fusion surgery to help correct this in December 2009. Spinal fusion is where metal rods are placed either side of the spine to help correct the curve.
It’s a huge surgery but Jono flew through it, he’s the most determined person I know. He was only in hospital for a total of 6 days. I’ll never forget that snowy day in December struggling to get him home on the train. Strangers looking at him, wondering what was wrong with him. Poor Andy stuck in Sligo General Hospital also with a back problem that ended up in a blood clot. Lucy just 14 and not knowing what was going on. That week was one of the toughest we’ve ever had. Both Jono and Andy came home on December 21st. That Christmas was a very quiet one, we only had Christmas dinner thanks to a kind neighbour who cooked too much turkey and called around with it.
Life moved on and Jono started recovered. Not only did the surgery make him grow 4 inches taller it also helped his breathing and digestion and he was no longer stuck in bed. He started to come out exploring with me. We walked for miles including up Knocknarea Mountain.
The last time Jono had a check up in Dublin we were told that his spine had started curving above the rods. That appointment was in January 2013. The surgeon didn’t want to keep dragging Jono up to Tallaght Hospital because it’s a 4 hour journey each way but said if we needed an appointment or if we felt it was getting worse to contact him.
In the last year and a half things have got worse. Jono ended up in A&E last year with breathing problems. He also can’t walk or stand for very long at all due to the pain and he spends a lot of time in bed. Trying to get an appointment is easier said than done. He was referred back by the GP last May. Two weeks ago he got a letter to tell him he was on a waiting list for an out-patients appointment. It took a year just to get that letter. Really he just needs an X-Ray to see what the story with his spine is and if he will need another surgery to extend the rods. Sligo don’t had an X-Ray machine suitable. Through all of this Jono never complains.
Anyway to get to the point of this post the one thing that has kept Jono sane through the long days of pain is Pokemon. Since he was given a GameBoy Color for his birthday one year Pokemon has been a huge part of his life. He’s met some really good friends through the game and this year has managed to get enough points to be invited to the World Championships in San Francisco. He’s one of only two people in Ireland that has achieved this in the 2016 season. Due to his health he can’t go on his own and due to money, which is a major stumbling block in our life, I couldn’t afford to go with him.
My friend Heidi suggested some kind of crowd funding, this is really out of my comfort zone but this isn’t about me it’s about Jono. So last night I put up this post and this morning we now have over €1000 donated. We can’t believe the generosity of people, some of whom we have never met. People from all over the world are donating to make Jono’s Journey become a reality and from the bottom of our hearts we thank you.
We’ll keep you updated on how things go.