Kari's Comments

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At 2:20pm on October 12, 2008, Stacy Anderson said…
Thank you for making me feel welcome. I feel so much better being part of a group that actually knows where I'm coming from. It's difficult at times to relate to others but I feel that maybe now I can stay in touch with people who are coping with this same disease. I hope to hear from you soon. Have a blessed day!
At 2:26am on October 12, 2008, Debbie Freeman said…
Thank You
At 11:31am on October 11, 2008, GUIDA YERTON said…
THANK YOU SO MUCH KARI,NEW TO ALL THIS, BUT IN TIME ALL WILL COME TOGETHER,YOU TAKE REAL GOOD GARE,AND THANK YOU FOR CARRING SO MUCH KARI,YOUR PICS ARE WOUNDERFULL.
At 1:11am on October 11, 2008, tirena said…
hey kari how are you ? hope all is well drop me note have a great day or night when you get this tirena
At 2:36am on October 10, 2008, Jasmine Stringer said…
Hi Kari
Thanks so much for welcoming me.
My son has Duchenne MD. He has had the gene sequencing done but no biopsy. So they don't know the level of dystrophen in his muscles, but they do know that he has a stop codon. Our Doctor, Kathy Selby, Head of Neurology at B.C. Children's Hospital put Skyler on deflazacort right away. She said in her experience it's a must, the boys who go on it do much better. She told us that it extends their lives. She also said that boys who do the stretching, who swim regularly, who do blowing, breathing exercises do much better.

I am just coming to terms with the side effects. Skyler is more aggressive and difficult, he was always such an easy going kid. We are managing it but it has taken some adjustments and some work. Another side effect that is really bothering me right now is the roundness of the face and the short stature.
This is all so new to me... i still want it to just go away.

I have just joined this site. I can't believe what a wonderful, valuable, loving place this is. I am so grateful that you took the time to share your experience with me.
p.s. Jared is gorgeous.
At 7:36pm on October 9, 2008, Marti said…
Thanks for welcoming me Kari. I'm not able to do much on here yet as my son Michael (37) is in the hospital with pneumonia.
Marti
At 1:11pm on October 9, 2008, Marian Brown said…
Thanks for the welcome! Jared's awfully cute. I like the last picture the best (he's looking through a telescope I think)
At 12:56pm on October 9, 2008, Gary Stepp said…
Thanks for the welcome! I have not spent much time on the site yet, however I will so thanks for letting me know about the Dad's section. I am very involved with this and spend much time researching. Please take a moment and get to know Garin better. Thanks again. His website:
http://www.caringbridge.org/visit/garinstepp
At 4:04am on October 9, 2008, Jasmine Stringer said…
Why is Jared not on deflazacort ? Did you opt not to take it ? Please tell me more.
At 5:04pm on October 6, 2008, barbara stringer said…
Hi Kari, thank you so much for welcoming me. I hope to learn as well as help in this battle through life. Sincerely, Barbara
At 10:05pm on October 4, 2008, Dana Maher said…
Thank you!!!!
At 8:09pm on October 4, 2008, Shawn Jessica and Joshua Arndt said…
Thank you
At 1:02pm on October 1, 2008, Lin Heald said…
Thank you so much - Last week I had a young dad (probably in his mid-20's and his comment was "Lin.....you ROCK.....we couldn't have managed our trip without you." So, I'm thinking that's a high compliment these days!!
See you soon,
Lin
At 7:55pm on September 26, 2008, Kathy said…
Kari, hi we saw a genetic cardio in Houston. We were told today by the neuro at the MDA that he believes Jonluke is Becker's and doesn't feel he needs steroids yet since he could run jump and had close to normal strength for his age and size. We are planning on getting a second opinion from Wong hope she comes up with Becker's to.
At 4:27pm on September 24, 2008, Susan said…
Hi Kari - Thanks. I've actually been a member for a while--never logged in officially I guess. I checked out your page from your link. Your son is adorable.
If you have some time one of these days, and if you're interested in sharing, I would love to pick your brain about your son's experiences with medicines and/or supplements. My son has been on deflazacort since he was 5 1/2--he'll be 11 this weekend. He is so short for his age (and we're not tall parents, so his stature was probably limited to begin with), and he is so upset about his height and his rounded features from the deflazacort. I am always interested in what other families are experiencing here, and how they deal with it.
Well, take care, and thanks for the welcome!
Susan Delete Comment
At 2:02pm on September 24, 2008, Jeff Trecha said…
Hi Kari:
Thank you for e-mailing me. We have 2 boys with BMD. My wife and I are sponsoring a runner in the 2008 ING NY Marathon. We have a web-site www.teamtrecha.com to help in coordinating the awareness and donations. Please visit it. Please e-mail me at jatrecha1961@hotmail.com. I would like to forward you an e-mail for donations to PPMD for the run.
I would like to discuss your son's BMD in more detail (soon). thank you Jeff and Amy
At 1:48am on September 24, 2008, daisy s. inajada said…
hi kari! my son started having difficulty in standing up when he was 12 and having bad posture and always corrected him for that. i also noticed how he walked so slowly on his way home from school. and i also told him to walk faster. it gotten worst that i sense something is wrong but i just keep it to myself. i hate the reality that my son has disabilities. then one day in front of the computer , my son told me that he already knows the name of his sickness and told me to check a link on favorites, it's muscular dystrophy. its hard to accept it at first but its harder when you watch your son walk esp on stairs. We are lucky that his classmates in high school are very supportive of him until now that they are in college, they waited for him in school and willing to give a helping hand. You know , i always tell him that its ok, all of us are not disease proof, everyone gets sick it is just sad that he is sick ahead of others.By the way he is doing well in his studies, its a lot more challenging but i know he is doing his best,.I know its an uphill battle for him but i just wish that there would be a cure someday.
At 9:42am on September 13, 2008, Patricia Snyder said…
Hey there, Kari.
Thanks a lot for welcoming me. It's so nice to meet you and your family.

Pat Snyder
At 1:19pm on September 12, 2008, Amanda Marfield said…
Thank you very much. I am really looking forward to learning more and sharing that information with my classmates and other future practitioners.
At 6:28pm on September 8, 2008, Kory's Sister said…
Hello Kari! Thank you for welcoming me. You have a very handsome little man pictured on your page. Thanks again. Kel Kel

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