Cindy q's Comments

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At 2:16pm on January 18, 2011, Dawn Dillon said…
Thank you for the email.  Mansfield isn't too far away.  Perhaps we could meet some time and introduce the boys.  My son, Luke, is 9 and was doing really well, but recently has seemed to degenerate a bit.  Brings all the old emotions back from finding out the diagnosis....I sure hope the brink on which we are standing for better treatment and possible cure will soon be crossed.  God bless...
At 8:03pm on September 28, 2009, Perlita & Gordy Hains said…
thx - we have over 200 5k'ers and 50+ 1 milers... it's going to be a great day for Levi. Hoping to send some of the proceeds to PPMD.
At 9:40pm on July 7, 2009, Perlita & Gordy Hains said…
I will most certainly check out galsfor cal....enjoy the day!!!
At 8:47am on February 9, 2009, jenn said…
hi there, wow, triplets! you must have been busy during the toddler years! I'm not sure where warren is, but im not good with that sort of thing. we live in a small town, just north of brattleboro vermont if that helps you at all in figuring out where we are, i always depend on our GPS to get me where we need to go. anyway, thanks for your message, hope all is well with your family, jenn
At 7:09pm on January 27, 2009,
Staff
Pat Furlong
said…
Cindy,
Please let me know if I can be of help. Your family is bsolutely beautiful! I think the good news is that Childrens and Mass General will be doing trials. You might register on www.duchenneconnect.org. It provides the ability to search for information and connects you to clinical trials. Once trials are posted, you will have the opportunity to read details and make decisions about participation.
Sincerely,
Pat
At 12:37pm on January 5, 2009, Kathy said…
Thanks for the info! We are seeing Dr. Kang at Childrens. We really like him because he is so nice and is also doing some clinical trials. But, we have heard about MASS Gen. and the Jett foundation. Is it possible to go to both? Not sure how all of this works yet.
At 7:22am on September 19, 2008, Joanne Wechlser said…
Hi Cindy, Hope the transition back to school was good. My kids are loving it, but getting up in the morning has been a challenge for all of us. They start early up here. I'm glad I had the chance to meet you. Let us know when your in Vermont.
Joanne
At 4:05pm on September 18, 2008, Eileen DeLong said…
Hi Cindy,
One of my boys is Calvin also. He is 12 and I have another boy Jared 9. They both have deletion 3-7. We don't live far from you.
I saw your boy is having trouble with reading. Both my boys struggled. Calvin seemed to finally get better around 3rd grade. Jared is still having trouble and he is in the 4th grade. Do you have an EIP for him yet? It has really helped with Jared. He gets special reading and writting help. We just try read with them everynight after stretches.
Eileen
At 9:54am on September 14, 2008, Joanne Wechlser said…
Hi Cindy,
I think we met on the shuttle from the airport. I'm the one from Vermont. Hope you had a good conference. Joanne
At 8:07am on June 23, 2008, cindy q said…
Hi Sus!
Thanks for joining me here! I can't wait to see you at the beach!
At 4:52am on June 23, 2008, susan said…
Hi from Sus in PA.. figuring out how to connect to you and the community from my keyboard! Looking forward to seeing you during the Conference in Phila.. Love the touch of lace on your page.. how'd you do that???
At 6:47am on June 20, 2008, BOZ4J said…
That would be great. I am not very familiar with this site. IF friends are making comments, then no one else can read them? Or there is some special way for posting in private? Please forgive me my computer ignorance...... I have many other atribiutes and technology is not one of them.......
At 6:48pm on June 17, 2008, Kelvinsmom - Michelle said…
My son has the same deletions, 45-52, out of frame, and some doctors (high up doctors) have been shocked that he has Duchenne, so much so that they said they aren't sure if he could be Becker or Duchenne. We haven't had the muscle biopsy, so won't know for sure. An OSU study had kids with the same deletion that all happened to be Becker, but that doesn't mean ours are of course. I'll invite you as a friend so we can more privately email. I'd like to know and compare our kids, maybe chat over the phone sometime! Thanks, Michelle
At 1:20pm on June 13, 2008, Kathleen Cacciaguerra said…
Cindy,
Hi, I just heard from my friend Anita, that you and your husband grew up in Mount Oilve. It is such a small world. My husband Michael and I moved to MO in 1999 from Bergen County.
I am sorry to hear of your son's diagnosis of DMD. My son Christian is 6 years old, He was diagnosed at age 3.
We would like to meet you the next time you come for a visit to Budd Lake. You can reach me at: 973-598-0972 or kat51170@msn.com.
Take care,
Kathleen
At 12:32pm on June 13, 2008, Anita Shotwell said…
Hi there! My husband and I both graduated from MOHS as well - in 1988 and 1990. I didn't know him in high school - we both went out of state after school and were introduced at a party years later. What a small world. My heart aches for our friends (also in Mt. Olive)and their son, though he is doing relatively well at this point. My son (age 6) is recovering from autism, and I'm looking forward to a day when your son and our friend are told that a breakthrough has frozen Duchenne in its tracks or, better yet, reversed it. Please let us know the next time you're in the area - maybe we can introduce the boys!
At 11:05am on June 9, 2008, Michelle said…
We see Dr. Darras too. But we're going to make an appt with Dr. Tseng at MGH for this summer. A sort of "second opinion". See the site: http://www.jettfoundation.org/jppnd.html
At 7:41pm on June 7, 2008, Gretchen Letteney said…
Cindy,
There is no MDA clinic or a clinic with doctors specializing in DMD or MD. We were going to UMass Medical Center in Worcester, MA. Luckily, the doctors that my son saw there were good but it was just luck. If they had not been trustworthy at all then I would have gone to Children's in Boston or Mass General.
My son is older and has cardiomyopathy now. He receives hospice services and is stable now. We had scares with a lot of fluid retention and then awful constipation but we got through those and he is taking meds to control those and he takes several heart meds. So, for now he is stable for his condition right now. I take one day at a time and am so grateful for each minute.
I don't think I should say more because I don't want to be alarming. Each child with DMD is different. I hope that your family is well and that you have found competent doctors for your son with DMD. There are many parents who could probably help more with names of doctors.
That isn't much help, I know. Thank you for your message and hope all is well for you and please take care.
Hugs,
Gretchen
At 10:35am on June 5, 2008, Michelle said…
Hi there. Our son Jake is 3 and was diagnosed a year ago with DMD. He has a premature stop codon mutation, so we are excited about the PTC-124 trials that are just starting at Children's in Boston. I don't know if you ever go to any of the DMD-sponsored events at Children's, or by Mass General (Christine McSherry's Jett Foundation). I was at the Children's one in April (?) and met someone right behind me who lives in Marshfield and her son has the same mutation as mine! This site should be a big help in finding one another all over MA.

My baby Cal (10 months) is unaffected.

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