Have you seen this new site???
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Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
Have you seen this new site???
Have you seen this new site? Its for Ian's Hope Foundation. Just found it on the web. Anyone heard of this? http://www.ianshope.org/faq.htm
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Have you seen this new site???
Yes, I know (through the net) the mom who made it. Very nice lady! Cute kid too!
Marieke (31, LOBPI)
Marieke (31, LOBPI)
Re: Have you seen this new site???
This is the non profit organization that I created to help other children and families that suffer from Brachial Plexus Injuries. I am so thrilled that you found it! We are still a young organization and are trying to raise funds to help people. Any expertise or advice pertaining to fund raising would be welcomed! I am eager to start helping people! It is so expensive to travel to get the proper medical care, I hope that we can start assisting people very soon! Also FYI... we are a recognized 501(c)3 corporation.
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kissygoose
Re: Have you seen this new site???
luvmykidz...I have a degree in youth and human services. we did a lot with fundraising when I was in college. If you have any questions I would be more than happy to give you some advice. I've been out of the loop for a bit but some things don't change.
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luvmy3kidz
- Posts: 1
- Joined: Thu Feb 01, 2007 12:48 am
Re: Have you seen this new site???
Kissygoose,
I would love any help that you can offer! Please feel free to email me. Thanks!
I would love any help that you can offer! Please feel free to email me. Thanks!
Re: Have you seen this new site???
Layne,
I happened across this posting and looked up your web page. Congratulations on starting such a wonderful organization! I hope you remember me (Paige's mom), but you were the first parents we met after Paige's birth. You and your husband words and meeting Ian was very helpful in preparing us for the road ahead. Terry let us know you relocated out of AZ and I hope your family is doing well!
Laura
I happened across this posting and looked up your web page. Congratulations on starting such a wonderful organization! I hope you remember me (Paige's mom), but you were the first parents we met after Paige's birth. You and your husband words and meeting Ian was very helpful in preparing us for the road ahead. Terry let us know you relocated out of AZ and I hope your family is doing well!
Laura