On May 11, 2004 we learned the cause of Lizzy’s weakness and our lives changed forever.
Spinal Muscular Atrophy, SMA. Elizabeth was diagnosed as type 1, or Werdnig- Hoffman Disease. Children diagnosed as type 1 are not expected to survive past their second birthday without extensive respiratory support and despite aggressive care it doesn’t guarantee survival, nor does survival come without complications and heartache.
Christen was told to take her daughter home and love her; she would most likely die before she turned of age one, two if lucky.
I dropped to my knees screamed as if someone pierced my heart with a hot knife. How could this be? How could a child so beautiful and full of promise be handed down a death sentence? How could we even consider just letting Elizabeth die? How could we not try to prevent the inevitable?
I knew then that I could not take this news lying down. I HAD to do something, anything. I wasn’t willing to let her go and I was not going to sit back and wait for her to die. Were these doctors crazy??
While everyone else grieved I went online and searched the internet. I was on a mission and I knew that it was up to me to save our little girl.(Reprinted from Elizabeth's Story In Jennifer Trust magazine)
I found the Stanford trial that DR. Wang had started that Lizzy was accepted into. She was put on Hydroxeurea in the drug study. The drug helped stopped the progression of Lizzy disease. Dr. Wang was so great to us during the trial. He gave us Hope.
I found many families that aided in support and proved to me that these kids can live with the right care
I think the hardest part fo me to learn was to listen to parents/caregivers of these kids more than the doctors that were unfamiliar with SMA. You have been taught since a young age that your doctors know everything and you need to listen to what they say.
We had gotten machines for Elizabeth to help her stay well on borrow from Laura Stants (SMA Support) and FSMA until Elizabeth was able to get hers.
We went to Stanford and then a few weeks later after we got back we were on our way to see DR.Mary Schroth. The best Pediatric Pulmonologist (in my opinion) in the world for kids with SMA. She taught us how to use Elizabeth's borrowed machines. DR.Schroth and her staff at U.W in Madison, WI is the best ever for kids with Type 1SMA.
No respiratory therapist that worked for our DMEs here in this area in IL would take on Elizabeth case until she was 17 months old.
DR. Hough(Our family doctor) does everything he can do to get Lizzy what she needs to help her and believed in me after we started being so agressive with Elizabeth's care He actually tells me, If it was not for me Lizzy would not be here." He is very proud of her. He does everything he can do for her and fights her insurance for the things he thinks she needs. He fought long and hard for the RSV shot but the battle was not won this past winter. He was very upset about that.
Lizzy is going to be six in September and doing great.
Her Papa actually can take her out-side now in her power chair and give her suction if she needs it. She can tell you what she needs. She plays with other kids and will now venture off across a room to interact with other children and come back for suction.
We still do not let our guard down with her but she has gotten much stronger and can tell you what she needs and when she needs it.
Her Amino Acid diet that is enhanced with donor Breast milk, her meds which is Hydroxeurea and oral Albuterol. She is one a daily respitory regiment which includes nebulizer treatments,cough machine the use of a IPV machine 2 times a day and coughs and suction as needed . She sleeps at night on bipap and if she is very sick is also on bipap. I stretch her legs and arms daily. I use massage oil and rub her down while stretching her. I do mouth exercises and do what ever it takes to keep her strong.
We need to get her a pool some how because she needs swim therapy so badly and was doing great with it. Then her PT said she would no longer see her. She has no OT and PT anymore because their are not any in the area that are willing to take her on as a patient. Hopefully, we have one that we are working on getting we have to pay out of pocket to for.
She is my heart and my life. To see what struggles she has faced and done well makes me so proud of her. She is am amazing child.
Its been a journey that has taught us so much, met several wonderful people and us made my faith stronger. She has changed my life.
Nothing is impossible if you believe in miracles.
I ask you now for prayers for another family that their brave little guy earned his wings today. His name was Logan Harman. Fly high Little Guy, fly free of disease.
I hate SMA.
www.our-sma-angels.com/elizabeth
http://www.youtube.com/watch?v=2lP5bYdmuWE New Video of Lizzy
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