This month I have been reading a lot about research and clinical trials that are currently going on for the treatment of Batten Disease. There are drug trials, gene therapy trials and a new trial currently recruiting for children with the juvenile form of the disease. This is always fantastic news for our small community of families that watch our children live with this disease every day.
It gives me hope that what we are doing with our fundraising efforts will soon pay off for our children.
But I'm also frustrated. Although these trials will hopefully lead to a cure to at least one form and eventually all forms of the disease, Nicholas never fits the criteria for any of these trials. When a cure if found, will Nick qualify for the treatment?
Nicholas has the Infantile form of Batten Disease. This form is normally diagnosed in children six months to 2 years of age. Nicholas was 6 when he was officially diagnosed. Unlike the "normal" infantile form, Nick produces a small amount of an enzyme that rids the body of waste. Because of this, his progression is much different and much slower moving. For this we are thankful. But, this also excludes him from the possible trials for his form. He is either too healthy or too old.
Am I greedy? Yes. I should be happy that his life expectancy is much higher than it could be. But that is just it. He still has a much shorter life expectancy than the average American. And what this disease is doing to his poor little body is so unfair.
I want to do everything in my power to keep Nicholas healthy. I don't want to see what they tell me is in his future. I refuse! There for I have hope; For Nick and for the other 500 children in this country with Batten Disease.
Thank you to everyone who has supported us with our fundraising efforts. Without this it would be hard for me to hold out hope of a cure in the future. This is what keeps me going...
Our last event - A Cure for Nick Golf Outing and Auction - raised over $19,000!! This is an amazing feeling!
Wednesday, September 7, 2011
Friday, August 5, 2011
Happy Birthday, Nick!
Today Nick turns 10. Double digets at last, he says!
Such an exciting time for him! Getting older, more responsibilities, more freedom...
Not so much! It is exciting and great for him. He doesn't realize how much he can't or isn't doing compared to his friends. He's just happy! That's all we want.
Today is always a bitter sweet day. Happy for Nick, sad for us. One more year down, how many more do we have?
I am going to hang out with Nick today and enjoy his day with him and try not to think of his future, at least for this one day...
Such an exciting time for him! Getting older, more responsibilities, more freedom...
Not so much! It is exciting and great for him. He doesn't realize how much he can't or isn't doing compared to his friends. He's just happy! That's all we want.
Today is always a bitter sweet day. Happy for Nick, sad for us. One more year down, how many more do we have?
I am going to hang out with Nick today and enjoy his day with him and try not to think of his future, at least for this one day...
Friday, July 1, 2011
Waterpark fun or not?
Today I took the kids on a much anticipated trip to The Lost Island Waterpark. They had been working on me for weeks to take them and today was the day.
It started off great, all of us going on many of the slides without much fuss about the long lines and the 98 degree weather. But as the day went on, Nick started to get angry and unhappy.
We took a break for lunch and drinks to calm things down. Nick said he felt better and was having a good time.
Unfortunately, Nick had tripped earlier on some steps when he was excited about getting to one of the slides and really hurt his foot. He refused to stop and wanted to continue to walk and enjoy the park.
As I watched Nick walk with a strange limp, left arm curled up and looking sideways toward the ground, I began to notice many of the other kids. Lots of kids around Nick's age running around together, going on slides with friends and laughing and having a good time. I began to think, why? Why Nick? Why can't he have this life, too?
Tonight I keep thinking about today. I remember when Nick could do what all the other kids could do. He loved to ride his bike, play hide and seek with his friends, play sports with his brother - he use to tackle Brad (4 years older) like he was made to be a line backer! The memories make me smile but with a little tear attached...
I'm angry, I'm sad and I absolutely HATE this disease. I want the old Nick back, I want him to have fun again and enjoy the things kids are suppose to enjoy.
It started off great, all of us going on many of the slides without much fuss about the long lines and the 98 degree weather. But as the day went on, Nick started to get angry and unhappy.
We took a break for lunch and drinks to calm things down. Nick said he felt better and was having a good time.
Unfortunately, Nick had tripped earlier on some steps when he was excited about getting to one of the slides and really hurt his foot. He refused to stop and wanted to continue to walk and enjoy the park.
As I watched Nick walk with a strange limp, left arm curled up and looking sideways toward the ground, I began to notice many of the other kids. Lots of kids around Nick's age running around together, going on slides with friends and laughing and having a good time. I began to think, why? Why Nick? Why can't he have this life, too?
Tonight I keep thinking about today. I remember when Nick could do what all the other kids could do. He loved to ride his bike, play hide and seek with his friends, play sports with his brother - he use to tackle Brad (4 years older) like he was made to be a line backer! The memories make me smile but with a little tear attached...
I'm angry, I'm sad and I absolutely HATE this disease. I want the old Nick back, I want him to have fun again and enjoy the things kids are suppose to enjoy.
Thursday, June 30, 2011
Forgetful
This morning Nick forgot how to wash the shampoo out of his hair. Yesterday he couldn't remember how to take the cap off his water bottle.
It's getting more and more difficult for Nick to remember how to do the things he does everyday. I'm hoping this is just a phase and he will bounce back but I can tell it is a little frustrating for him as well.
His short term memory is showing some challenges as well; forgetting about conversations we have had as soon as they end. This doesn't happen all the time but on occasions...
Nicholas is also having a hard time being outside. When I am outside with the other kids, he will scream and cry if he needs me before he will come out to get me. Yesterday I was on our deck and he would walk up to the door and knock to get my attention but wouldn't open the door.
I really hate this disease and hate what it is doing to my son...
It's getting more and more difficult for Nick to remember how to do the things he does everyday. I'm hoping this is just a phase and he will bounce back but I can tell it is a little frustrating for him as well.
His short term memory is showing some challenges as well; forgetting about conversations we have had as soon as they end. This doesn't happen all the time but on occasions...
Nicholas is also having a hard time being outside. When I am outside with the other kids, he will scream and cry if he needs me before he will come out to get me. Yesterday I was on our deck and he would walk up to the door and knock to get my attention but wouldn't open the door.
I really hate this disease and hate what it is doing to my son...
Friday, June 24, 2011
Update on doc appointment
Nick and I had a rainy trip to Iowa City on Wednesday. Met with his psychiatrist to hopefully change up some of his sleep meds. We are starting him on a new one tonight and we are hoping for a good nights sleep soon!!
This was our last appointment with this doctor, whom we have really liked! He has finished his training and is moving out of state. This is one of the downfall of going through the University of Iowa for appointments but in the process I hope that Nicholas has taught them as much as they have helped us over the years.
This was our last appointment with this doctor, whom we have really liked! He has finished his training and is moving out of state. This is one of the downfall of going through the University of Iowa for appointments but in the process I hope that Nicholas has taught them as much as they have helped us over the years.
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