by Jennifer Sauer
Scott and I had both waited many years to find the right person and the right time to have a child. Luckily, when we decided to have our first child, we got pregnant right away. Gracie Claire Sauer was born January 9, 2006, in Henderson. Although she was delivered by c-section a few weeks early due to a high risk pregnancy, she was “perfect” according to the pediatrician and of course to us, as well.
One night in early October of 2006, although Gracie had never been sick, we had to rush her to the emergency room at St. Rose Sienna, looking for answers as to why our child was unresponsive and could no longer sit up on her own. We were referred to a pediatric neurologist and the first of many brain MRIs was ordered. That was the beginning of our journey to try and find a diagnosis for what was wrong with our Gracie.
Gracie is now 2½ years old and after being told by her geneticist at UCLA that she would never walk, talk and may not live past the age of 4, Gracie is a happy, otherwise healthy child. She receives physical, occupational and speech therapy through Easter Seals five days per week and is eager to work hard and learn new things. However, due to the neurological problems that affect her gross and fine motor skills, she is still unable to sit up or walk without assistance from us, her therapists or her special needs equipment. She tries hard to talk and can now say “mama,” “book,” “good” and my personal favorite, “oh, yeah.”
We still don’t know exactly what is wrong with Gracie or what caused her regression. Though Gracie’s doctors believe that she has a metabolic disorder, specifically a Leukodystrophy, which affects the white matter in her brain. Such disorders are very elusive and difficult to diagnose and we have even been told by her pediatrician that we may never know what is wrong with Gracie. We do know that she is extremely smart and capable of accomplishing so much more than her doctors ever believed she could and she has continued to amaze us all.
We first learned about NAPA Institute from an online special needs group that we subscribe to at Yahoo! Parents had spoken before of intensive therapy programs that their children had attended, but this one caught my attention. It was a three week program that was specifically created for children with neurological disorders and it seemed to propel kids into the next developmental level in a short amount of time. NAPA offers what’s called “suit therapy,” which at one time was only available in Holland, and employs the use of a suit that was originally developed by the Russian Space program for astronauts trying to acclimate to gravity after being in space for prolonged periods. NAPA also offers speech, aquatic therapy, hyperbaric oxygen treatments and combines these therapies with alternative approaches, such as their Wellness Program, Chiropractic and Massage.
When our good friend and my former co-worker, Suzy Hanson, learned about the program at NAPA, she was intent on making it possible for Gracie to go. Suzy discussed it with a few others, including our friend, Kathleen Wall, who wanted to help make it happen. So, although it has always been hard for me to ask anyone for help, here I am, asking for the help of our community for Gracie’s sake. As you can imagine, the cost of having a child with special needs, without receiving any outside assistance, can be difficult - physically, emotionally and financially. But Gracie is a very special child and I know that she can accomplish so much more than any doctor has ever given her credit for. She has so much to give and touches everyone that knows her or knows of her story.
We have set up a “Gracie Fund” at the Boulder Dam Credit Union to help us get Gracie to NAPA at the end of August. The Credit Union will be hosting a silent auction to help raise money for Gracie’s trip. The auction will take place the week of August 4th 8th, and we are looking for items to be donated. If you have anything that you would like to donate or are able to make a cash donation to the Gracie Fund, we would be extremely grateful for your help. Thank you to all who have already donated or have committed items for the auction.
We know that Gracie will not be healed after having three weeks of intensive therapy, but if she could just learn to sit up on her own or gain that little edge that she needs to move forward, it will all be worth it. Though we do hope to see great progress and would love to be able to take Gracie back to NAPA in the near future.
If you would like to learn more about NAPA Institute go to www.napainstitute.com, or to learn more about Gracie’s journey, visit www.GracieSauer.com.
Thank you to all who are able to help in any way.