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vicki george
  • Female
  • wichita kansas
  • United States
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if you could help please

Started this discussion. Last reply by Cheryl Markey Feb 2, 2009. 7 Replies

will he be nice

Started this discussion. Last reply by Karen Barnett Oct 10, 2008. 5 Replies

 

Welcome! be apart of our lives

Profile Information

About me:
My name is vicki and i got on here because we found out last year my son has md. but now 2 days ago we found out that our youngest daughter does to so we are here to share our story.
About my family:
my family lol we are a crazy bunch there is never a dual moment, we are very close. we come together has one in a hard time. chantz gos to school and devin gos to school and mikaylay stays at home with me and we clean house and have fun
Name(s) of child(ren)/individual(s) with Duchenne:
chantz george
Age(s) of child(ren)/individual(s) with Duchenne:
0-3, 4-6
City:
wichita kansas
i just wanted to give a update, chantz is doing ok and he is going to thearapy and stuff. We just found out that his little sister mikayla, is now in consern her cpk levels are higher than his she only 3 and her level was at 4000 and chantzs was at 3000. so now we have to start all over with her, i am torn apart i didnt think that my heart could break anymore but i was proven wrong my baby boy and now my baby girl. what is a mom supsosed to do?

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At 9:46pm on February 25, 2009, Ana said…
Hi Vickie!! You have a Beautiful Family!!
This is the first time I've seen your page. This is also the first time I've seen anyone from Wichita. I am originally from Wichita and moved to Texas 5 yrs ago. Good luck and God Bless
At 8:41pm on February 14, 2009, CVita said…
NRJ_20_4_Biancheri.pdf

Here is a paper on the range of alpha-dystroglycan disorders. Basically if you didn't see sympoms at birth it shouldn't be one of the severe ones. Once they have more info from the blood they should be able to pin it down. Here is a good site to look up some of the terms in the paper - look under CMD and/or LGMD (because some of the dystroglycanopathies present like a couple of the LGMDs).



Also, I'm going to see a Dr. Bonnemann at Children's Hospital of Philly soon for my son -


he specializes in both CMD (dystroglycanopathy and others) and LGMD (sarcoglycanopathy and others). He has published a lot of papers and is at the forefront of research. If you find your doctors are at a loss I suggest you go see him. I haven't seen him yet but from his credentials he's one of the best in the country for both what your son and mine have. It is important to see someone who is very specialized - obviously based on the rarity of your son's disorder (and my son's) since they are both rarer than Duchenne - your son's even more so. Best of luck. If you have any questions write back to me on here or at vijo100@optonline.net
At 8:27am on February 13, 2009, CVita said…
Hi Vicki, I left a post in your discussion. Did you find out whether it was alpha-dystroglycanopathy or alpha-sarcoglycanopathy? If it is the latter, I can give you tons of info on it as it is what my son has. I hope all is well.
Chris.
At 10:01pm on November 11, 2008, Gisel Rivero said…
Hi Vicki, you have such a beautiful family. God Bless.
At 12:10am on October 31, 2008, Rhiannon Traigle said…
Vicki,
I apologize for not getting back to you sooner! The whole family had the virus this week and it's been crazy! I have to echo everyone who has posted on your page by saying that I too am glad you found this site! PPMD and all of the parents here are the BEST at providing support AND education!! As for your question about what your doctor will explain and my son's deletion of exon 45....well, the truth is, who knows what your doctor will explain to you! I have been unfortunate that we don't have very good doctors here in south louisiana and since my son was diagnosed in January, I already know ALOT more than our MDA dr. here does!! I am not kidding! We are choosing to see a dr. in Cincinnati (Dr. Wong..you may have seen a bunch of stuff about her on this site already). Since January I have tried to learn ALL I can about DMD and other parents have been the BEST sourse of information! Keep searching this site and ask as many questions as you can! We learned from DNA testing that my son Riley's mutation is a deletion of exon 45. This may all sound greek to you as it did to me in the beginning but you will catch on quick. I can do a much better job of actually explaining it to you over the phone so please feel free to call me anytime! I do work during the day, but my job is very flexible, so if I can't talk I just don't answer. I am also up pretty late at night so you can call anytime in the evenings too. Please call my cell when you get the chance, I'd love to talk with you! My number is 985-713-1634.
At 12:07pm on October 26, 2008, Christine Piacentino said…
Hi Vicki - Glad you found this site. I know that this all new to you and your family. There is a lot of information to process and digest. It does get better over time. Feel free to reach out and ask questions. We are all here to help each other.
At 10:54pm on October 25, 2008, Amanda Trosper said…
You have a beautiful family by the way. I look at it this way there is alot of worse things that could be wrong with our boy's. I'm just thankful that I have the kid's that I have I couldn;t ask for anything else. I'm just glad you have a strong family. Having a strong family is the key for everything.
Amanda
At 8:25pm on October 24, 2008, Jennifer Collier said…
Hi Vicki,
I got your maessage and wanted you to know that you and your family have been in my prayers. I think every parent on this site can attest to the fact that it does get a little easier. Just take life as it comes. I am glad to hear that the therapy has been helping Chantz. Keep your chin up! =)
~Jen
At 1:01pm on October 12, 2008, Michelle Strasheim said…
I would just like to offer you some encouragement that with the right care you son can live to be as old as his 30's. There is alot going on in the way of research and all though there is no significant treatment or cure right now, I still have hope for our young boys. The key to a longer life and longer mobility is proper care! You have to find a good team of Dr.'s! What area are you in? Please contact me anytime. I will be praying for your family.
At 12:50pm on October 12, 2008, Colin McKenzie said…
Dear Vicki

We understand your anger and feelings, all I can say is that you need to take it slowly and deal with all your emotions. Each person has a different way of doing this, so do it your way. Your son will be here for a long time yet, enjoy him and never loose hope for that effective treatment or cure, but don't bank on it and loose precious time, live each day.

The things we have gained from this "bad news" have enriched our lives, we do so many things now, today is important and use it wisley, something we all should be doing, but somehow had got into a rut of leaving it till tomorrow. Sometimes tomorrow never comes.


Please look us up if you need an opinion or just a fellow parent to give you a boost every now and again.

regards
Colin
 
 
 

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