How are things going? I'm glad to hear Natalie is settling in. Things are going well here and we're ready for the summer. We won't be able to make it to Atlanta this year - we had already scheduled our vacation down the shore, we're a little disappointed in the timing - but it is what it is. Take some good notes. We had plans for this weekend two - but one of us might just make it to the PA meetup this weekend - still in the air though.
I noticed that you belong to the Dr. Wong group and was wondering if you are having reservations about CHOP?
Have you been to see Dr. Wong yet? Jacob has been there twice. I went the first time with my daughter and his Dad took him the second time and then Heather and I are taking him out again in April. We still see Dr. Finkel but feel that he overlooks or doesn't seem to think some of the things that Dr. Wong checks out are important?
Sorry, I have not been on the computer for awhile. I am an RN- Unit Manager at Lehigh Center in Macungie, it is a Genesis Nursing home and rehab. We will be getting branded in January as a TCU, focusing on Orthopedics. I am truely amazed at how many people on this site are healthcare workers. My husband works at Olympus in Center Valley. We would love to get together with your family. I will e-mail you guys soon. Jess
I wanted to introduce us. My name is Lauren Fritzand I live in Pottstown with my husband and two boys. We learned this summer that both our boys have Duchenne. Jake is 5 and Ryan is 21 mths. We will be at the muscle team challenge as well. We are working with Dr. Finkel at CHOP. Hoping you and you family are well - your son looks adorable! Nice to meet you, Lauren
I am sorry that I never responded to your last posting. I was away, and I am just catching up now. I am sorry that I missed the fund raiser!
Thank you for the tips about CHOP-- we definitely needed my parents there, as the appointment was an unbelievable 3 1/2 hours! I think it went really well though, and I do think that we are going to move forward to get our son on steroids b/f the end of the year. Have you decided what you are going to do?
I recently figured out how to get on the new site and noticed your son's deletions. My son has a deletion of 51-55 and is doing well. How's your son. I'm also from PA...the other side. Pittsburgh area. Did you attend the conference this year. We received out news in 07 and have not been to a conference. I'm having a really hard time dealing with it and not sure how
I'd handle it...hopefully next year I'll be ready.
My son is horseback riding and I believe it has really made an impact. My son is 6.
Hi Michael. Thanks for the info about CHOP. I need to get my son's records down there, and I guess I'll have my parents meet us there in the morning.
I wanted to let you know that we met a family at the conference that I think lives very close to you. The town is Perkasie (or something like that). There names are Barbara and Norm Rush and her email is email@example.com. Just tell her that Regina Reidenberg gave you her email.
All the best,
Hello Michael and Happy Belated Father's Day,
First let me tell you my heart goes out to you and your family over your son Michael's recent diagnosis. Deanna’s, my wife, and my heart were broken on 5/22/2008 when we learned of the DMD diagnosis for Connor. Having a strong faith and strong family and friends has been a big help in our healing process along with the many positive, hopeful, and instruction filled communications from Pat Furlong and this PPMD community. We are going to the annual PPMD conference in Philadelphia in July as learning all we can has been great Therapy for us.
I wish you and your family and especially your son Michael only the best on the new path that you find your lives on. The most heartening thing I have heard is from a very experienced veteran of the Houston, TX MDA clinic, Ann, when she was told about Connor's diagnosis through a person we were introduced to through a friend, Scott, who has Becker's MD. Ann asked Scott how old Connor was again, Scott told her 2 1/2. Ann then told Scott, "We are going to fix this boy" as Ann knows the latest that is going on with MDA and DMD research. Scott said Ann is not known to make flippant bold statements like that, so the relay of her strong statement about Connor gives us great hope. You son is a little Younger than Connor who is about 30 months, so Ann would say the same thing about Michael - "MDA, PPMD and all the DMD research and the results are going to Fix Michael".
we are haveing a picnic for NJ families and are extending to PA families who are local enough. (PA is BIG!!!).
it is on June 29th and we would love for your family to come. please see the nj families group
I am the MomMom of Jacob who will be 8 years old in July and was diagnosed with DMD a year ago. Please join the PA members board so that we can organize a get-to-gether. I'm in Doylestown and my daughter and her family are in Lansdale.
I see you are from Quakertown ,PA. we live in Middlesex NJ about an hour from you. if your family ever wants to get together please let us know. we have a 6 year old with DMD and a 4.5 year old.
I am sad to hear your family is joining up. Dealing with the diagnosis of DMD is beyond difficult. We found out recently too, last October. Our son is much older tho, 9.5 years...yours is still a baby!
I hope you find PPMD as we have, filled with caring and informed parents. My husband and I would be lost without Pat Furlong and PPMD. DMD parents/families sometimes feel cut off from the "normal world" so at least we can connect here for information and support.