Over 4th of July weekend Jon got a couple of phone calls from his friends. That weekend was pretty busy. But, phone calls for Jon to attend parties are rare; we almost never give up any opportunity for him to attend a party with his friends. We always try and make it work.
Jon usually hates to use his wheelchair for anything. But his friend that was hosting the 4th of July party lives near the park where the fireworks are shot off, and everyone at the party planned on walking over to the park. I heard Jon on the phone with his friend. “You want me to bring my wheelchair? How come? Oh we are going to walk to the park? OK, I’ll bring it. Will someone be able to push me to the park?” The conversation ended. Jon hung up and said “Mom, my friend is having a party for 4th of July, can I go, it’s Saturday”. I said “Jon, remember we got tickets to Watkins Glen to see Shea Holbrook race. You can go when we get back, what time does the party start?” Jon said 5 or 6. I said “Well ; the race will end sometime between 5:30 and 6pm.” “You can get to the party around 7:30 or 8:00, will that be too late?” Jon called his friend back. It was agreed that Jon would still attend the party .
Jon and I had a fun day at the races, but Jon was excited to be with his friends and celebrate the 4th of July. My husband dropped him off at the party and we waited for Jon’s call. It was midnight when he called to be picked up. Jon was tired came home and went straight to sleep.
The next morning I asked, “So, how was the party?”” Did you get over to see the fireworks?” Jon looked at me with a huge smile on his face and said “Yup, the party was good; the fireworks were awesome!” I said, “So, how did you get over to the park, did one of your friends push you?” Jon answered;, “Yup, one of the bigger guys pushed me.” “He hit a couple of divots in the grass and some bumps in the concrete.” ” Mom don’t worry it was all good. I had a blast.”
It was really hot that weekend, Jon got a phone call on Monday, to go to a pool party. Jon was looking forward to going, it was 95 degrees and he wanted to go swimming. I said “Jon do you know what kind of pool they have?” “”Is it above ground or in ground?” Mom, it’s above ground.” I said, “How you are you going to get in it”. Jon no longer can use stairs or ladders, so I was worried. Jon said “ Mom, I can figure it out with my friends, they will help me.” My husband dropped him off for the party. Jon called around 5 and asked if he could stay longer, he stayed another hour.
When he got home I asked him how he managed getting in and out the pool. He said that two of the bigger guys helped him in and out of the pool and he really enjoyed hanging out with his friends.
Jon is always telling me that I worry too much. As a Mom you want your kids to enjoy themselves and have a little independence. But has a Mom dealing with Duchenne you worry 10 times more and watch your child loose what little independence they have. While most kids at 16 have their drivers license and can borrow the car to hang out with their friends, Duchenne kids need the support of their parents more as they get older.
Jon once told me, “Mom you worry too much, I’m doing fine, but I agree it does suck having to rely on your parent’s for everything.” “I don’t really miss my friends normal, because my normal is not the same as everyone else’s”. My husband and I try and let Jon have as much independence as he can handle. It is a tough balancing act for all of us.
Wednesday, July 21, 2010
Saturday, July 10, 2010
Whew, it’s been a busy couple of weeks of learning and inspiration!
This time of year is usually pretty busy for my family. Most year’s we are busy preparing to march in the 4th of July parade with Jon’s boy scout troop. Jon’s Boy Scout troop didn’t march in the parade and. Jon was focused on finishing his Eagle Scout project. Also this year the annual Parent Project Muscular Dystrophy conference and Shea Holbrooks racing and fundraising efforts all seemed to collide into the same couple of weeks.
Kat and I went to the Parent Project Muscular Dystrophy Annual conference in Denver. Kat was helping with the kids’ camp session at the PPMD conference and participated in the sibling panel. Kat had the younger boys during the kids’ session. Most of the boys were live wires. 18 boys on steroids to treat Duchenne; adding candy into the mix makes for an interesting day camp session. Kat made me laugh when she said “OK Mom, after 5 hours with these kids, I have decided not to have children” “I can’t imagine how any Mom with more than two kids deals with them?” That’s a decision my daughter will have to make, when she is ready! I hope it will be later rather than sooner. She still has a lot of life to live before having children. The sibling panel was very well received, Kat’s key point to parent’s with of Duchenne kids was to not take out your frustration regarding work, dealing with Duchenne etc. on your non-affected kids. They get the dynamic, but they are really just kids as well. I think any Duchenne sibling matures faster than other kids their age. I can honestly admit that through Kat’s high school years my household didn’t function really without her help. I was sitting in the audience; and was proud that she felt that she was able to express her view point so freely.
The conference always has a large amount of information to process and sift through. I am so glad that the presentations will be posted on Parent Project Muscular Dystrophy’s web-site www.parentprojectmd.org. I will be able to review the material and process it at my own pace. I don’t have a medical background, so I need time for the material to sync in. I can attribute Jon’s overall health to the information that I receive at the conference. After the research study results from Harvard regarding Protandim, we have decided to start Jon on that supplement as well. I was not an early adopter on this supplement because he was already taking other supplements, and there wasn’t any independent research regarding Protandim and Duchenne until the Harvard study.
I met with the PTC Therapeutics during a breakout session regarding Ataluren. Amanda Becker said it right. One father mentioned his son’s cardiac function dropped 20% after discontinuing Ataluren. While there is no data to confirm a direct relationship, stopping Ataluren was the only change to his son’s medications. As each person expressed their own experience with Ataluren and interest in participating in an access program, Amanda said that in her view any change, any loss of function and surely a change in the cardiac function constitutes an emergency. PTC’s medical officer had never thought of Duchenne in that way. Duchenne is an emergency. Given this new insight into Duchenne, PTC said that they would work on access and regulatory approval concurrently. Genzyme will continue to work with PTC for access and a path forward for European trial participants. This was positive news on all fronts. I’m in hurry up and wait mode to find out when we will be able to get access. This information will be provided after the meeting in Naples at the end of July.
I was inspired to hear Nick Dobes story during the awards dinner. Nick Dobes was awarded Weisman Fellowship this year. Nick was inspired to work in the Duchenne field by his best friend and roomate from college who has Duchenne. While he spoke about his friend and all the things they did in college. I was struck by the caring and very close friendship that he formed with his friend. As I look forward to Jon heading off to college and hope Jon is able to have such a friendship that will last after college and into their careers. Nick’s story was heartwarming and inspiring.
Another inspiring person is Shea Holbrook. Shea is rookie race car driver that is inspired to raise awareness for Duchenne Muscular Dystrophy and Parent Project Muscular Dystrophy because of her two cousins, Matthew and Jordan Klapp. (Matthew 1989 – 2008). Shea hopes to be the next Danica Patrick (Indy Cars). Jon and I went down to Watkins Glen World Challenge race on July 3 to watch Shea race. It was an exciting race to watch. Watkins Glen is known as a fast track to drive. We both enjoyed watching the race. Shea placed 8th in her #67 Dick Ide Honda and PPMD Honda Si car despite having faulty brakes. You can check out her newsletter on the Watkins Glen race at www.shearacing.com The Watkins Glen race will be aired on Versus TV on July 17, 2010 from 11pm – midnight. Shea’s next race will through the streets of Toronto, Canada on July 17, 2010. We had a good time filming a TV spot that we hope will be aired on Versus.
I enjoyed watching Jon’s face as we watched the cars go around the track. He really enjoyed himself at the race. For me, it brought back memories of watching racing in Loudon NH with my big brother. He took me to see stock car racing, funny cars and dragsters. It was a thrilling treat for me as kid as my brother is 10 years older than I. I thought it was really awesome that he would let me hang out with him. When I was younger I wanted to be the next Shirley Muldowney. She was first lady of drag racing. However, it was not meant to be. As an adult I have resigned myself to driving between 75-80 mph on the thruway on my way to Buffalo listening to loud Rock and Roll. I just can’t drive 65. I guess that ‘s why I follow Shea Holbrook’s racing accomplishments.
As these past weeks continue into summer, I am so happy that I was able to attend the PPMD conference in Denver, and witness my daughter become a young woman. I am grateful to have met such inspiring people like Nick Dobes and Shea Holbrook.
Kat and I went to the Parent Project Muscular Dystrophy Annual conference in Denver. Kat was helping with the kids’ camp session at the PPMD conference and participated in the sibling panel. Kat had the younger boys during the kids’ session. Most of the boys were live wires. 18 boys on steroids to treat Duchenne; adding candy into the mix makes for an interesting day camp session. Kat made me laugh when she said “OK Mom, after 5 hours with these kids, I have decided not to have children” “I can’t imagine how any Mom with more than two kids deals with them?” That’s a decision my daughter will have to make, when she is ready! I hope it will be later rather than sooner. She still has a lot of life to live before having children. The sibling panel was very well received, Kat’s key point to parent’s with of Duchenne kids was to not take out your frustration regarding work, dealing with Duchenne etc. on your non-affected kids. They get the dynamic, but they are really just kids as well. I think any Duchenne sibling matures faster than other kids their age. I can honestly admit that through Kat’s high school years my household didn’t function really without her help. I was sitting in the audience; and was proud that she felt that she was able to express her view point so freely.
The conference always has a large amount of information to process and sift through. I am so glad that the presentations will be posted on Parent Project Muscular Dystrophy’s web-site www.parentprojectmd.org. I will be able to review the material and process it at my own pace. I don’t have a medical background, so I need time for the material to sync in. I can attribute Jon’s overall health to the information that I receive at the conference. After the research study results from Harvard regarding Protandim, we have decided to start Jon on that supplement as well. I was not an early adopter on this supplement because he was already taking other supplements, and there wasn’t any independent research regarding Protandim and Duchenne until the Harvard study.
I met with the PTC Therapeutics during a breakout session regarding Ataluren. Amanda Becker said it right. One father mentioned his son’s cardiac function dropped 20% after discontinuing Ataluren. While there is no data to confirm a direct relationship, stopping Ataluren was the only change to his son’s medications. As each person expressed their own experience with Ataluren and interest in participating in an access program, Amanda said that in her view any change, any loss of function and surely a change in the cardiac function constitutes an emergency. PTC’s medical officer had never thought of Duchenne in that way. Duchenne is an emergency. Given this new insight into Duchenne, PTC said that they would work on access and regulatory approval concurrently. Genzyme will continue to work with PTC for access and a path forward for European trial participants. This was positive news on all fronts. I’m in hurry up and wait mode to find out when we will be able to get access. This information will be provided after the meeting in Naples at the end of July.
I was inspired to hear Nick Dobes story during the awards dinner. Nick Dobes was awarded Weisman Fellowship this year. Nick was inspired to work in the Duchenne field by his best friend and roomate from college who has Duchenne. While he spoke about his friend and all the things they did in college. I was struck by the caring and very close friendship that he formed with his friend. As I look forward to Jon heading off to college and hope Jon is able to have such a friendship that will last after college and into their careers. Nick’s story was heartwarming and inspiring.
Another inspiring person is Shea Holbrook. Shea is rookie race car driver that is inspired to raise awareness for Duchenne Muscular Dystrophy and Parent Project Muscular Dystrophy because of her two cousins, Matthew and Jordan Klapp. (Matthew 1989 – 2008). Shea hopes to be the next Danica Patrick (Indy Cars). Jon and I went down to Watkins Glen World Challenge race on July 3 to watch Shea race. It was an exciting race to watch. Watkins Glen is known as a fast track to drive. We both enjoyed watching the race. Shea placed 8th in her #67 Dick Ide Honda and PPMD Honda Si car despite having faulty brakes. You can check out her newsletter on the Watkins Glen race at www.shearacing.com The Watkins Glen race will be aired on Versus TV on July 17, 2010 from 11pm – midnight. Shea’s next race will through the streets of Toronto, Canada on July 17, 2010. We had a good time filming a TV spot that we hope will be aired on Versus.
I enjoyed watching Jon’s face as we watched the cars go around the track. He really enjoyed himself at the race. For me, it brought back memories of watching racing in Loudon NH with my big brother. He took me to see stock car racing, funny cars and dragsters. It was a thrilling treat for me as kid as my brother is 10 years older than I. I thought it was really awesome that he would let me hang out with him. When I was younger I wanted to be the next Shirley Muldowney. She was first lady of drag racing. However, it was not meant to be. As an adult I have resigned myself to driving between 75-80 mph on the thruway on my way to Buffalo listening to loud Rock and Roll. I just can’t drive 65. I guess that ‘s why I follow Shea Holbrook’s racing accomplishments.
As these past weeks continue into summer, I am so happy that I was able to attend the PPMD conference in Denver, and witness my daughter become a young woman. I am grateful to have met such inspiring people like Nick Dobes and Shea Holbrook.
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