Kim I'm not sure if you have but they killed the PTC124 study today. We were called this evening and told to stop the drug and they would let us know what to do with the rest of it. This is not the news we were waiting on. :(
Hey Kim, we are almost a full week into the medicine, and while he does go to the bathroom more then he used to, he hasn't had any diahrrea. He also urinates more then he used too, but so far no big issues. He is taking it very well with milk and has had no real issues(knock on wood). Just hoping its doing what it is suppose to do. I'll get up with him twice a night to pee, and take him for a BM more often if that is the worst thing we deal with. Keep me posted if you would about Troy.
Just wanted to update you that Brandon started on the medicine today. Will let you know how he does on it. Hopefully it will be the beginning of good things for a whole lot of boys, including Tyler. Keeping you all in our prayers.
I hate to hear he and every other boy who aren't going to be in this trial. I hope that we have as much success as others I have heard about. I really hate to get my hopes up about this study any more then I have the others we have done in the past. But I just feel we need this now for him. I will always pray for a cure for all of our boys, not just my own!
I have been off the board for a little bit. I have not had the opportunity to get on the computer as much as I would like so I am grabbing the opportunity now.
Wow, Tyler starts school early. Nick did too. Nick started August 11th. He missed the 13, 14 and 15th because we were in Cincinnati to see Brenda Wong. Nick hates to miss school. It throws things off for him. He told me to re-schedule the appointment, which I did not. We had to be at the SF airport on the 13th at 6 am. We got there at 5 am and realized we had left the scooter key at home. SF is about an hour and a half to two hour drive from Sacramento. Well, Nick wanted to go home. I said no. I was able to enlist the airports help in getting us thru everything. You can push the scooter. We had the key fedex'd the next day to the hospital. It all worked out and I am always grateful to have made the trip.
I do check the old board. Just been busy with work and home. Our air conditioner went out and it had to be replaced....we get temps are high as 104. We are back being cooled.
I am getting ready for our Campaign for the Community. I am a Chair person. Campaign for the Community is where our employees can pick a charity to donate. We have this every year and the company raised 3.4 million I believe for different charities. I think I raised $8,000 for PPMD. It helps. I am a speaker and I feel I am helping to educate and raise awareness. It will be busy for me from Sept thru Oct.
I hope to get on the board a little more than I have.
You take care and we will stay in touch. Give everyone hugs from my family to yours!
Hi Julie. Things are going well. Yesterday was the first day of school. I'm so darned proud of Tyler! These boys just go!!!! How are you? How's Nick? Yesterday was really the first time I got in on any discussions on the new board. Do you still get on the old message board? Gotta run. Early dismissal at school. Have a great day!