Char Burke's Comments

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At 1:35am on September 7, 2008, Marla Swope said…
Hi Char-
Thanks for the invite to WA (NW?) families. I would love to join the group :) This new community forum for PPMD has been a lot of fun:) I love seeing all the pictures that everyone posts!
I was born and raised in CA! We lived in Visalia from the time I was born until I was 7, and then my dad was transfered to Ceres, a little town next to Modesto. From my Freshman year in HS , until I left for college, I lived in a little town called Soulsbyville, which is just outside of Sonora. I loved CA as a kid, but it sure has gone a little bit nuts in the last couple of decades. If my dad didn't still live there, I'd probably never go back.
I love all your pictures you posted :) Your little Will sure is a cutie!
Thanks again for the invite :)
Have a great week!
Marla
At 12:02pm on September 6, 2008, April Mischke said…
Where are you located at? We are in Bigfork, Montana but we have family in Spokane. What exactly is NW familys group? We havnt been able to find anyone in our area with DMD or support groups. Im putting a call into CDC Child Development Center to see if they can help. Any help or advice we can get is helpful. Thank you
At 7:28pm on September 5, 2008, Melinda Colby said…
Would an afternoon playdate work? I have a 10:45 at Childrens on October 3rd and on the 15th our last appt. is at 1:15! I have so much to tell you! Give me a call if you have a chance. My cell is on the "outs" right now, so I can't access your number. Hope to hear from you soon.

Mindy
At 1:31am on September 2, 2008, Melinda Colby said…
Hi Char!

Jacob and I are going to be up in Seattle on Sept 7th, Was wondering if you would like to get the boys together to play. We have a sleep study that night at Childrens in Bellevue, but I was thinking that during the day, we could visit! Let me know!

Melinda
At 6:37pm on July 10, 2008, Lisa Jones said…
Things are going great. Stephanie and I went and picked Bradley up from camp today which is 3 hours from home. He was supposed to come home Saturday but got homesick; he says he did have a lot of fun, though. We are going to a baseball game tonight. My husband's brother is a manager of Rent One and he got us a Suite at no cost. So that will be a real treat for Bradley after coming home from camp; well really a treat for all of us! Stephanie is doing great too. She had a week of church camp last week and had an awesome time.
At 12:57pm on July 9, 2008, Misty VanderWeele said…
Glenallen is 200 miles or less up the road from where I like here is Palmer. Small world. Unfortunately I don't recognize the either of the womens names you mentioned. Lets keep in touch.

A little history of me. I come from a HUGE family and DMD isn't anywhere in my families. I was the first one. This isn't that uncommon.

Have you seen this U-tube video on Parent Project? If you haven't here is the link, http://www.youtube.com/watch?v=9U28QPHIA34

Talk to you soon,

Misty
At 6:51pm on June 26, 2008, Tonya said…
Char,

Thanks for the info about the supplements you give Will. Idebenone is a synthetic form of CoQ10, don't really know too much. I think they are starting a phase III trial in Europe for DMD. Apparently it's something like 30 to a 100 times stronger than CoQ10, but somehow it works a bit different for the better. I really don't know, just thought you may have heard more on the subject, we should look further into this.
Tonya :-)
At 12:09am on June 25, 2008, Tonya said…
Hi Char,

I've also been corresponding with Melinda and we may be getting together next week sometime if you are interested. I wanted to ask a few questions if you don't mind. I was curious as to what supplements you have your son on. We have Gavin on Vitamin D3, CoQ10 and Protandim. I've ordered Juven, but it hasn't arrived yet. I was also wondering about Idebenone, do you know any families that are giving it to their sons? I'd be interested and appreciative of any info, advice ect. I look forward to meeting you!! Tonya :-)
At 9:46am on June 18, 2008, Tonya said…
Hi Char,

Actually Covington is South of Seattle. Do you know the Kent area?

We were diagnosed in November 2007. We started off at Children's in Seattle, but then chose to go to Cincinnati to see Dr. Wong. Gavin turned 2 in March and I have a daughter that will be 4 in October.

Little Will is adorable, just a cutie pie!! I have only met 1 other family from here that has a DMD boy. I would like to meet more families,sounds like you will be meeting with Melinda, maybe we could all get together sometime.
Tonya :-)
At 8:43am on June 6, 2008, Laurie Paschal said…
We are still giving him the Fuel Shot. I'm not sure what we'll do when we run out. I still have about 20 bottles, so that will be awhile. Hopefully there will be an option by then.
At 11:15am on June 5, 2008, Laurie Paschal said…
Hi Char!! I've got a pictures of all three kids up now.
At 11:20pm on June 4, 2008, Melinda Colby said…
Oh! By the way, Jacob will be four in July!
At 11:18pm on June 4, 2008, Melinda Colby said…
Hi Char!

Yes, I would love for our boys to get together. Give me a date and time!

Melinda Colby
At 10:00pm on June 4, 2008, Kristi Powell said…
Hey Char..It's great to have pictures go with names. For years on the old message board, most you have no idea what people's children look like or the person posting, I love this new set up! Anyway, I have read several of your posts over time and thought I would say Hi and tell you how precious your son is!!
At 1:24pm on May 20, 2008, Tina said…
Hi there

Sorry for the delayed response. It's been awhile since I have been on. Too many forums to keep up with...

No, we have not started our son on Haelan. I want to hear more from others and hope to hear something soon from the scientific world regarding how mice are reacting to this food supplement.
At 11:34pm on May 14, 2008, Rhiannon Traigle said…
Char,
Thanks so much for your comment and for your prayers! Will is THE cutest thing!!! I am so glad to have this page and to be able to share with other parents like you!!
At 12:33am on May 4, 2008, Polly Sundeen said…
Hi Char! So great to finally see some pictures of Will - what a cutie! I'll email soon and catch up - just wanted to say Hey and let you know I am thinking about you all!
Hugs,
Polly
At 11:23pm on May 3, 2008, Mary Sahagun said…
Thank you Char.

I'm really loving this. Looking at all these wonderful pictures.

God Bless,
Mary
At 11:58pm on May 2, 2008, Karen Barnett said…
Hi Char,
Glad to see you joined! Welcome!!

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