Page 1 of 2 12 LastLast
Results 1 to 10 of 15

Thread: My little girl got injured at the age of 5 ... please help

  1. #1

    Exclamation My little girl got injured at the age of 5 ... please help

    Dear readers, dear Dr Young,

    I'm a mother of 4 children, the youngest being 17 months right now. When the baby was born, my husband took the 3 older kids out for a drive so me and the baby could get some rest. They never returned. They ended up in a terrible car crash, only because of someone elses impatients. My husband and my daugther of 5 years old were injured very bad. My daugther now has a spinal cord injuiry at T2-4.

    We live in the Netherlands and here rehab is more about accepting and adapting then about getting the most out of it. We couldn't tell our girl there was no hope for her ...... i was able to get her into a locomotor program with Dr Susan Harkema at Frazier Rehab in Louisville Kentucky, only 4 months after the accident. We have lived in the US for 10 months doing intensive therapy. Now we are back in the Netherlands and we continu the locomotor program at home with a weigth baring treadmill.

    You can probably understand that we as parents are still looking for a cure for our daugther, she just turned 7 now and still has a whole life in front of her. We read about a lot of trials, but then again that they are being postponed or even canceled.

    I would like to know if there are any trials coming up within the next year in which my daugther could participate!? She is in perfect health and has the right fighthers mentality. She is working hard every day in therapy on the treadmill and she is not giving up, neither are we as parents, she is more then worth the fight.

    So please anyone, if you know something .... anything, please tell us. A doctor we could email, a trail that maybe coming up. Maybe Dr Young can help us out. I sincerly hope so. It pains us so much to see her this way, we would travel the whole world for her to get better.

    Hoping for responce.

    Warmest greetings,
    Inci
    mother of Ameli
    http://www.facebook.com/ameli.icli

  2. #2
    Quote Originally Posted by Ameli2005 View Post
    Dear readers, dear Dr Young,

    I'm a mother of 4 children, the youngest being 17 months right now. When the baby was born, my husband took the 3 older kids out for a drive so me and the baby could get some rest. They never returned. They ended up in a terrible car crash, only because of someone elses impatients. My husband and my daugther of 5 years old were injured very bad. My daugther now has a spinal cord injuiry at T2-4.

    We live in the Netherlands and here rehab is more about accepting and adapting then about getting the most out of it. We couldn't tell our girl there was no hope for her ...... i was able to get her into a locomotor program with Dr Susan Harkema at Frazier Rehab in Louisville Kentucky, only 4 months after the accident. We have lived in the US for 10 months doing intensive therapy. Now we are back in the Netherlands and we continu the locomotor program at home with a weigth baring treadmill.

    You can probably understand that we as parents are still looking for a cure for our daugther, she just turned 7 now and still has a whole life in front of her. We read about a lot of trials, but then again that they are being postponed or even canceled.

    I would like to know if there are any trials coming up within the next year in which my daugther could participate!? She is in perfect health and has the right fighthers mentality. She is working hard every day in therapy on the treadmill and she is not giving up, neither are we as parents, she is more then worth the fight.

    So please anyone, if you know something .... anything, please tell us. A doctor we could email, a trail that maybe coming up. Maybe Dr Young can help us out. I sincerly hope so. It pains us so much to see her this way, we would travel the whole world for her to get better.

    Hoping for responce.

    Warmest greetings,
    Inci
    mother of Ameli
    http://www.facebook.com/ameli.icli

    I am so sorry to hear about your little girl, it breaks my heart. Please check this link, and talk to Dr. John McDonald. He does a lot of good things with children with spinal cord injury, and I believe is one of the best places for kids from what I read.


    best of luck,manouli.


    http://www.spinalcordrecovery.org/


    contact information:


    http://www.spinalcordrecovery.org/ICSCI-Contact.php

  3. #3
    Senior Member mcferguson's Avatar
    Join Date
    Oct 2009
    Location
    San Antonio, TX
    Posts
    153
    Ameli2005,

    I'm sorry I can't help with your question, but I am curious, is your daughter making progress with the locomotor training?
    T5/6, ASIA A, injured 30 Nov 08
    Future SCI Alumnus.
    I don't want to dance in the rain, I want to soar above the storm.

  4. #4
    Hi Inci, I am mum to a now 8 yr old injured in a car accident age 4 and I can really empathize. My 2 yr old was also in the car at the time but got away with bruises while my daughter and I ended up in intensive care. She sustained a T1 complete SCI.
    I have been on the journey you are now on and still am but on a less intense scale. We were lucky enough to have got early rehab in the UK and learned best practice in care but like you I needed more-recovery,cure and all doors I knocked on weren't answered or slammed shut. WE did go to KKI in baltimore and got a restorative therapy programme based on electrical stim and we purchased an FES bike. WE spent 2 weeks there and had full intentions of continuing at home but life and school took over. AS there was a complete severance of spinal cord we had little hope of recovery but Noirin does function higher than her level of injury would expect. She uses Reciprocal gait orthoses in parallel bars (only for therapy-not functional) but has not yet mastered the frame. She has excellent wheelchair skills and has no interest whatsoever in walking. So i really applaud your effort with your daughter. My determination and push for independence/recovery (i am an OT) put such a strain on our relationship i had to back off. I bought the standing harness but never used. She used to get AD when they tried litegait in KKI.
    WE also tried hyperbaric oxygen in the early days and it was during this that she felt her first spasm-not much of a recovery huh?
    WE struggle to keep up her care here in Ireland and now attend shriners in philadelphia annually for scoliosis management. THe growth spurt at your daughters age really progressed the curvature but thankfully with bracing we are doing a good job at preventing further deterioration and even correcting slightly.
    It is free care-very much a needs basis and accept foreign patients-may be worth a go if you have orthopedic issues.
    THe other good thing about shriners is they are big into research and have written a book on best care of child with sci. Once on their database if trials come up you may be informed if appropriate.
    i eagerly follow the umbilical cord stem cell trials of dr wise young and there are plans to conduct these in children age 8-13 i think in 2013 in shriners. need to be complete thoracic. it would be worth contacting SCInetUSA to find out updated info. I have sold bracelets by SCAPER (on CC) to help fund these trials. I send the money to "just a dollar please" programme.
    I have been told by DR. Betz-the medical director in shriners that the cure will happen in her time but she will be one of the last to receive the surgery as there is such extensive damage-too big a bridge to gap so won't see results in a decent time frame so unlikely to be accepted in trial.
    Another person i found really good to talk to was one of the top researchers on embryonic stem cell in john hopkins hospital baltimore. it was arranged for us when in KKI.
    Whatever you decide to persue I wish you and Amelie all the best. I hope that you managed to get compensated financially for the trauma you have all been through so you can afford the best therapy. It is a hard long process and took us 4 yrs. I must say i am still gutted at what happened but it has become our new life-whether we like it or not and horse-riding is now my daughters joy in life and she is generally very happy. It's my son that gets frustrated that he has a sister that can't play the games he wants to play-but who is to say she would have anyway.
    My thoughts are with you all. FEel free to send on a Private message anytime and we can swap emails if it helps.
    Sonia.

  5. #5
    Quote Originally Posted by Ameli2005 View Post
    Dear readers, dear Dr Young,

    I'm a mother of 4 children, the youngest being 17 months right now. When the baby was born, my husband took the 3 older kids out for a drive so me and the baby could get some rest. They never returned. They ended up in a terrible car crash, only because of someone elses impatients. My husband and my daugther of 5 years old were injured very bad. My daugther now has a spinal cord injuiry at T2-4.

    We live in the Netherlands and here rehab is more about accepting and adapting then about getting the most out of it. We couldn't tell our girl there was no hope for her ...... i was able to get her into a locomotor program with Dr Susan Harkema at Frazier Rehab in Louisville Kentucky, only 4 months after the accident. We have lived in the US for 10 months doing intensive therapy. Now we are back in the Netherlands and we continu the locomotor program at home with a weigth baring treadmill.

    You can probably understand that we as parents are still looking for a cure for our daugther, she just turned 7 now and still has a whole life in front of her. We read about a lot of trials, but then again that they are being postponed or even canceled.

    I would like to know if there are any trials coming up within the next year in which my daugther could participate!? She is in perfect health and has the right fighthers mentality. She is working hard every day in therapy on the treadmill and she is not giving up, neither are we as parents, she is more then worth the fight.

    So please anyone, if you know something .... anything, please tell us. A doctor we could email, a trail that maybe coming up. Maybe Dr Young can help us out. I sincerly hope so. It pains us so much to see her this way, we would travel the whole world for her to get better.

    Hoping for responce.

    Warmest greetings,
    Inci
    mother of Ameli
    http://www.facebook.com/ameli.icli
    Dear Inci,

    I am so sorry to hear about your husband and Ameli. At the present, to my knowledge, there are no clinical trials aimed at restoring function in children with spinal cord injury. I believe that the doctors at Shriner's hospital in Philadelphia are delivering the best care to children with spinal cord injury and you may want to consult with them concerning the orthopedic care of your daughter.

    One of the problems that Ameli will face in the coming years will be scoliosis. We are just discussing the use of newer procedures for treating scoliosis in children in another topic.

    Shriner's Hospital will also be the place where clinical trials will be carried out with therapies that we are now testing in adult spinal cord injury, if these therapies turn out to be safe and show promise in adults. Please do keep in touch with us on CareCure and I will try my best to post the latest research on children with spinal cord injury.

    Wise.

  6. #6
    I continue to hear about a stem cell procedure in Texas. However I can find no information on what it could be. There is a family near me heavily fundraising for this. Are you aware of what this could be? Here is a part of her story.

    http://www.theleafchronicle.com/arti...aralyzed-wreck

    All proceeds will go toward Emily’s fund. Emily needs more than $100,000 to attend the stem cell research in Texas and the Frazier Rehabilitation in Louisville next summer
    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


    Sometimes it is easier to widen doors than it is to open minds.

  7. #7
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Wise, Could Biogen be trying something originally aimed at those with TM? The second TM Center is at Southwest in Texas...

    Quote Originally Posted by addiesue View Post
    I continue to hear about a stem cell procedure in Texas. However I can find no information on what it could be. There is a family near me heavily fundraising for this. Are you aware of what this could be? Here is a part of her story.

    http://www.theleafchronicle.com/arti...aralyzed-wreck

    All proceeds will go toward Emily’s fund. Emily needs more than $100,000 to attend the stem cell research in Texas and the Frazier Rehabilitation in Louisville next summer
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8
    Quote Originally Posted by Sue Pendleton View Post
    Wise, Could Biogen be trying something originally aimed at those with TM? The second TM Center is at Southwest in Texas...
    Sue,

    I am not sure. Biogen has or is conducting over 260 clinical trials (http://clinicaltrials.gov/ct2/results?term=biogen), mostly in multiple sclerosis but they have no current trial on spinal cord injury or transverse myelitis. They do hold the "rest-of-the-world" rights to develop and market Ampyra. I had originally hoped that Doug Kerr would galvanize the company to do something with transverse myelitis or spinal cord injury. I haven't talked to him for a while. I miss him.

    Wise.

  9. #9
    It's got to be something to do with this. It's the only thing I can find and it mentions KY and TX. I hope they aren't getting into something they shouldn't. That was my only concern. What do you think of this?

    http://www.uthouston.edu/media/story.htm?id=1803753
    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


    Sometimes it is easier to widen doors than it is to open minds.

  10. #10
    Quote Originally Posted by mcferguson View Post
    Ameli2005,

    I'm sorry I can't help with your question, but I am curious, is your daughter making progress with the locomotor training?
    She went from ASIA A to a B, while the damage done in her cord is really big. Futher it keeps her in good health/condition, it helps her bowel program and her core got stronger and so her scoliosis didn't worsen and is still very flexible. Her leg musles have a good length, hips and knees are flexible and no spasms.

    I must say that next to locomotor we also go to the pool once a week and she uses a standing frame for about 1,5 hours a day and no more then 4 to 5 hours of sitting. She does a lot laying on her tummy in a big comfortable bed in the living room. And almost every night i stretch her legs for about 15 minutes or so.

    Hope that helped.

    Inci
    mom of Ameli

Similar Threads

  1. Injured girl home, celebrating Christmas
    By manouli in forum Spinal Cord Injury News
    Replies: 2
    Last Post: 07-03-2007, 02:22 AM
  2. Girl injured in gymnastics class
    By Max in forum Spinal Cord Injury News
    Replies: 0
    Last Post: 05-11-2006, 08:36 AM
  3. Family of injured Hatley girl still fighting Honda verdict
    By Max in forum Funding, Legislation, & Advocacy
    Replies: 0
    Last Post: 12-22-2003, 07:25 PM
  4. Injured Juneau girl and her nieces form singing group (SCI)
    By antiquity in forum Ability & Disability News
    Replies: 0
    Last Post: 01-08-2003, 04:57 PM
  5. Replies: 1
    Last Post: 08-19-2002, 06:38 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •