I've had a crazy school year with Francis, but other than that everything is great. Hope you have a safe trip and that it is productive. You will be in my prayers this weekend and next week. To bad Dr. Wong is not in Buffalo, NY you could have stoped in to see us, I won't be going to the conference this either even though I would love to. To much going on, but at least going to see Dr. Wong might make up for it. God Bless,
Hope all is good with you and your family. I just thought I would say hello. I think I saw somewhere along the past year you said you were taking Andrew to see Dr. Brenda Wong? I was wondering if you had gone there or when you are going there. If you have how did it all go? The reason I ask is we will be taking Francis to see Dr. Brenda Wong as well on August 11th, 12th & 13th. Just wanted to know what to expect.
Happy holidays! I hope all is well. I have not heard back from you. I will try to call some time soon. The holidays have been real busy for me right now.
I did want to let you know about Leslie Guzman. She has joined the PPMD website. I do not know her personally but have heard good things about her. She helps spanish speaking families. I thought of your friend you had told me about a month or so.
You take care and let me know how you and the family are doing.
I spoke to your Rep's L.A in DC today. I told her about your meeeting with him and his commitment to sign on. She said she would check with him on this. She said you and I could call back and talk to her about the status. She is in DC and her name is Celia Daly. I plan to call tomorrow. She was trying to reach him for an answer about his support on the bill.
Hope you and your family had a wonderful weekend? Do you have any questions for me regarding your son with DMD?Since I have been down that road,I'm the perfect person to ask,so feel free to ask me anything.
Unfortunately, I did not get to go to conference. I hope to be able to raise the funds and go next year. Actually I just heard this song for the first time about two weeks ago and it was introduced to me by Karen Barnett. So, then I looked for this song and this is what I found. Great, huh and just hits the heart right where it counts.
Let me know how it goes with obtaining your congressman's signature.
The conference was good in a lot of ways. My mother in-law is fired up about getting her Senator Harry Reid to sign the MD Care re-authorization Act. So, we shall see about that one and hopefully others will work on obtaining signatures too.
Take care and looking forward to meeting up again!
Hi Beth - Thanks for contacting me today. I also joined the CA group today. I haven't been on in a while so I didn't know it existed. We are in Northern CA, near Oakland/SF, about 20 miles east. Wow, I have not met anyone who's son has a similar deletion. Our DNA said that he is missing 8-19. Alex was diagnosed in Nov. 04 at age 5. He was a late walker (age 16 months) and met alot of milestones late, but there was no major issues going on. He is getting around great still. He is very uncoordinated and can't play sports or ride a bike, but he walks and runs great. He rarely falls or trips...maybe once a month. He tires easy. We got him a motorized scooter 1-1/2 years ago for long trips. That helps alot. We have a pool and he just learned to swim this summer. He was fearful of the water....He sees a pediatric cardiologist annually and his heart is doing great. He saw Dr. Wong for the first time last July. He is going back next week with my husband. He is on 22 mg. of deflazacort per day for 3 years now, ace inhibitor for 1-1/2 years and metadate (for focus issues) for 1-1/2 years. I know this is alot of info crammed in message. Call email or call me to discuss further. I would love to know more about your son. I must say it is encouraging to know your son is still walking. Now that Alex is about to turn 9, I am so scared....Thank you and I hope to hear from you soon. My home email: firstname.lastname@example.org