For those of you reading this for the first time this is "Lizzy". She turned eight years old on Sept. 29, 2011. She has Type 1 Spinal Muscular Atrophy. She was a very floppy baby and quit holding her head up shortly after birth. I knew there was something wrong very early because she was so weak.
Lizzy was given a death sentence at her diagnosis. Her parents were told when she was 7 months old" that she would die probably before her first birthday longest around two years old. " Lizzy is our miracle, our little fighter and proved them so wrong.
I ( her grandmother/caregiver) did NEVER give up hope or did I ever believe I could not find ways to help her.
I found the Stanford Hydroxeuyra study with main researcher DR. Ching Wang. Christen called them right away. Lizzys was accepted!! That was our first glimmer of hope for Lizzy's future. We traveled a little bit more than a month after her diagnosis out to California. It was the first time any of us had ever flown and Lizzy was enrolled in Phase 1 blind study. We flew out there monthly. Then every 2 months , then ever since and until a few years ago we drove twice about a year apart. Lizzy still gets the med but from DR. Mary Schroth at American Family children's hospital in Madison, WI.
Lizzy starting seeing DR. Mary Schroth that is in our opinion the best pediatric pulmonary specialist for SMA in the whole world. She told us what we needed to do to save Elizabeth's life. The first thing was her respiratory protocol and taught us how to use a cough machine. Next, was a Gtube surgery( Gastrostomy feeding tube insertion is done in part using a procedure called endoscopy. For information on how this procedure is done, see: Esophagogastroduodenoscopy (EGD).
After the endoscopy tube is inserted, the skin over the left side of belly (abdomen) area is cleaned and numbed. The doctor makes a small surgical cut in this area and inserts a small, flexible, hollow tube with a balloon or special tip into the stomach. The doctor uses stitches to close the stomach around the tube.) and Nissen( During the fundoplication surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This procedure is often done using a laparoscopic surgical technique. It can also be done as traditional (open) surgery) .
Elizabeth did well with the surgery. It was done on her 10 month birthday.
Elizabeth had a few illnesses and was hospitalized when we could no longer take care of her at home twice after that but after she was 17 months was not hospitalized again until she was 7 years old with RSV and in March for a suspected HMPD virus where she was intubated but recovered quickly.
First thing is I want to mention we do not have a lot of money but we have found ways to help Lizzy and have a wonderful support system with other families that deal with the same thing as we do.
Lizzy will tell you herself" She loves her life!"
She started the AA diet at age 1 year old and around age 2 started getting donor breast milk because she had a hard time absorbing fat and stayed the same weight and would not grow for a year. The breast milk also helped her health and made her stronger.
She is eight years old as I said. She has a tutor that comes twice a week , Has swim therapy , and has Myofasical Release. She has a power chair and hopefully gets a new one soon because this one is getting too small and her needs have changed. She is on the computer quite a lot and enjoys life.
Lizzy lives here with her mom, grandfather and me her (caregiver and grandmother). We have a old pit bull dog Pepper and two fish.
I always believed in God and Jesus but since Lizzy was diagnosed I had a "spiritual awakening" I guess you can say and let God take care of us. Prayers , HOPE and believing in miracles get me through each day besides Elizabeth's smiling face. Many times Divine intervention have come in to play and help us through the roughest times.
More about Elizabeth http://www.our-sma-angels.com/elizabeth/
the Amino Acid at http://www.aadietinfo.com/
Research for SMA , help and support http://www.sophiascure.org/
research for SMA http://www.miracleformadison.org/
SMA Support - http://smasupport.com/
More links http://www.fightsma.org/
http://www.fsma.org/
http://www.smaspace.com/
http://www.our-sma-angels.com/b4sma/
"We believe in miracles because we live with one!"
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