Nearly a year on
It's nearly one year since we walked into the clinic in Leyland with Jack and we received the news that he had Duchenne Muscular Dystrophy, DMD.
Whenever I stop to think about that day it reduces me to tears. I remember staring at a brick wall outside the clinic and wondering if what I had heard was real. I couldn't believe what was happening to us.
I said to Alex this morning that I can't remember what it was like to have a feeling of no worries at all.
But it doesn't help to dwell on negative feelings because it doesn't make things better for Jack, it doesn't help us as a family and it won't enable us achieve our goal to find a treatment or cure for Jack's condition.
Many things have happened since October last year. The charity is up and running and it has grown at an incredible rate thanks to the amazing support and hard work we have had from everyone involved. I don't think it is possible to express in simple words the gratitude I feel. People have been quite simply amazing.
There is optimistic news from the medical community too. Research, albeit slow, has shown some promising results.
The whole point of setting up the charity Joiningjack was to fund research and trials in to finding a treatment or cure for DMD. This condition occurs when a person does not produce a protein called dystrophin because of a mutation in the gene. The dystrophin gene is made up of 79 exons, any one of these exons can be mutated by a deletion, duplication or a point mutation.
A concept that is gaining a lot of attention in the medical world at the moment is a procedure called exon skipping. The idea is to patch over the piece (exon) which has the problem or patch over an exon that allows the puzzle to fit back together again making a "wild type dystrophin" and hopefully slowing down the progression, or even halting the illness.
Scientists are working on ways to patch over the different pieces and deliver the drug more effectively. They are currently working on a solution for individuals with a problem with exon 51. About 13% of people with DMD have a problem here.
Unfortunately this is not suitable for Jack as his mutation lies in another piece.
It is believed that 83% of people with DMD could benefit from exon skipping and once a successful compound has been proven to work for exon 51, it could be adapted to solve the problem with other exons. We will be campaigning for this to be done as soon as possible!!!
Exon skipping isn't a cure, but it is thought that the treatment could produce enough dystrophin to downgrade Jack's condition to Becker MD. Becker is a less severe form of Muscular Dystrophy and one which could add many years to his life. Also reporting just before christmas, are summits results for a phase one clinical trial into upregulation of uthrophin, a protein that could do a similar job to dystrophin.
We will continue to raise money until scientists eventually find a cure but it's going to be a long process. It is thought that a combination of treatments will allow this condition to be managed in years to come.
That's my science lesson done for now!
Jack started school last week which was a big milestone for us, like it is for many parents.
Unfortunately I was laid up in hospital as I had been booked in to have an operation on my knee. I had been putting off this operation for ages but I had no choice because Joiningjack have been invited to take part in the Dubai Sevens Tournament in November and I've been nominated as Captain. I can't believe I am putting the boots back on after all this time. I haven't thrown a pig skin around for about six years. I say "pig skin" because of what my good mate Tony Mestrov used to say. He'd ask; 'are you carting the piggy up this weekend? I can't believe that soon the answer will be yes again.
As I lay at the hospital Alex sent me a picture of Jack dressed in his new uniform.
It was a day I knew would bring a lump to my throat even without the added burden of DMD and the pain of missing it in person by being in hospital.
But fortunately Jack seemed to really enjoy his first day. We were really pleased about it and relieved but as he went to bed he asked "Why can't I keep up when everybody runs away from me in the playground?"
It broke our hearts.
Worrying about your child as you leave them standing on their own in a big school yard on their first day of school is some thing every parent can relate to. Picturing them unable to keep up with other children because they have a fatal condition is the situation that we are in. How can we tell him that he is not going to get better? How can we tell him that it is not going to be okay? It's something we haven't been able to face yet.
We have to be honest with Jack and drip feed information in a way that he can understand.
We have told him that everybody is different and that his legs are not as strong as some of the other children. But we tried to reassure him that he is good at other things like drawing and building models with Lego.
He mentioned the school yard for the first few days and we know that he is aware that he's different. At least he is enjoying school; on the Friday Jack came home with three potatoes he had collected from the school garden. One of them was the size of a thumbnail but he insisted he had them for his breakfast the next day! We put them in the microwave but luckily he didn't fancy them and instead went for his cereal.
Since I last sat down to write there have been many positive things for us to concentrate upon and I want to say thank you again for the way people have embraced the charity. The Joiningjack Wigan v Saints game was a complete success and I'm incredibly grateful to everyone who was involved. I sure you will agree that it brought a different atmosphere to the night and a feeling of emotion and togetherness throughout the stadium. Seeing the fans doing the JJ salute as Sacred Heart sang the Joiningjack song was fantastic. We unveiled JJ the Duchenne Destroyer, his diary is becoming hectic. My good friends outside selling the merchandise were almost in tears from the sheer generosity of the fans digging deep to support the charity.
We have sold nearly 10,000 wristbands in 10 days which is fantastic. Livestrong wristbands may have sold 80 million so we have much further to go but we're on our way!
I will have to sign off now because Jack wants me to make him a jelly! But before I go I feel like I need to finish by saying another thank you. This one is to every single person out there that has run a marathon, sold a cake, sung a song or put up a poster.
YOU are the people that make this dream achievable.
We will tell the nation about the much needed support for people with DMD, then we will tell the world.
Believe me we will do this!
DMD is a condition that has haunted families since time began.
Everybody hopes that this generation have a different path than those that have gone before but it will take much needed awareness and lots of money.
Nobody has the right to tell me that it costs to much money to save my boy's life.
I will be here fighting till my last breath! Stay with us! Please.