Hi Kimmy, glad to hear the interview went well. If you are able to get to the on-line article, just copy and paste the link (browser box) that is at the top of the page and send it to me here or in an email. Would love to read it. Good on you for winning the bet with your Mom! You are both good sports.
Team Super Simon raised $5800. so he won the prize...again. But then when we got home we had the sad news that one of the DMD boys had died, age 22. He was going to be a film maker, had already done a few shorts on his own.
Kimmy- eteplirsen is still in trial, right now in ambulatory boys. There has been no research of this drug in the non-ambulatory patients, so we don't yet know if this drug may have benefits for people living with Duchenne who are no longer walking. Hopefully future trials with eteplirsen will give us that information.
Thanks Kimmy Watters. We are doing really well considering. We have had to make some very quick changes to our lives and are now seeing his illness for what it is rather then living in a state of wonderment and worry. Luckily I connected to this community and our local FACES which has made this transition so much easier. We are very fortunate to live in this age of technology, I could not image of others managed prior.
it is so great that you choose to be happy. I on the other hand had to go to a funeral today. Jacob is doing good he is sitting in his daddys lap watching a movie. It is beautiful here ill take some landscape pics and email them to you. We love the summer time always at the beach. What is it like there ive never been that far up the coast i go the other way.
He has a few friends that stay in our neighborhood. And a couple at school. Theres this little girl that goes to school with him and when kids pick at him she trys to beat em up because she says she loves jacob. He is brave and has a lot of heart too. I think all kids with dmd are heros or should be because i couldnt do what they do.
I have not been up that way i want to one day but we like warm weather. We are actually in beaufort sc. Jacob doesnt like racing or football he likes video games and playing at the park. He doesnt like school because the kids tease him but he is one of the smartest in his class.
It actually hasnt been that cold here we live at the beach on an island. So its mainly only cold early in the morning or right on the water. We went through the pains and aches but now they seem to go away. I have been in denial for a few years and now i am finally realizing that its not going away it is a way of life for us.
Happy New Year to you too, Kimmy! And a good birthday to your mom!
The boys are just getting back into their school routine after the holidays. No, Simon is not finished his shots and will hopefully continue to receive them for another 18 months. He never complains and I think he can feel the difference on the medication. And we just changed his deflazacort steroid from a daily to an alternate day dosing (so he takes it one day, but not the next) to see if will help him to grow. The U.S. is big on giving growth hormone (no pun intended), but it's not the same here in Canada. He also began an ACE inhibitor as heart prevention. He has done all of this really well.
I'm starting another on-line course tomorrow, and 2 swim classes. One is just aqua-fitness on Monday mornings, and then an actual swim course on Thursday nights at 8:30pm (that one will be hard because I don't really like going out much into the dark and cold night! I prefer being home in my cozy pj's with my family. I will just have to force myself so I can be in better shape. Nobody ever said it was supposed to be easy, right?
Well, it's getting late and I have to go pack my swimming stuff so that I am not running around tomorrow morning searching like the boys do for their homework or gym shorts.
Wow, and way to go girl!!! Fantastic , for the weight loss, the walking with a cane and becoming a motivational speaker too. Holy Moly, you're going to be a start! Let me know when your Youtube video is out Kimmy. I will show the boys my friend Kimmy The Awesome!
My husband and boys are back from a Scout camp weekend, so I have lots of muddy laundry to do before the week begins. Take care Kimmy, and keep up the great momentum.