"My daugher's name is Kendra Rose Bausch. She is 10 months today! Kendra has had quite the summer. After monthly check-ups for weight checks and gross motor progession checks since birth, we have been to many specialists, ending in a neurology visit, in which Kendra underwent an MRI and genetic blood testing where she was poked 8 times before they were able to stabalize an IV. Our MRI came back perfect, which meant something much more serious. Our genetic testing for her came back with Spinal Muscular Atrophy Type I. Spinal Muscular Atrophy (SMA) is the number-one inherited cause of death in children under two. Seven million Americans carry the gene for the deadliest inherited infant disease...and they don't even know it. Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support. Her dad, Chris, and myself (Kristin Jennings) will have to undergo genetic testing ourselves to pinpoint if we are both carriers or just one of us and what that means for future children. Kendra has been undergoing extensive therapy for PT, OT, and now Speech as well. Most will lose their swallow and be required to use a feeding tube, along with much other respiratory equipment we already have in place for her. Kendra will never crawl, walk, or have the strength to support her own weight. She will be in a motorized wheel chair her whole life beginning at age 2 when we are able to purchase one. We continue to see many amazing doctors in Madison. For awhile it felt as though we were living there, but right now, has slowed down except for her daily therapies. We hope things don't have to pick up in Madison for a very long time, if ever, as this will mean severe illness, or procedures to undergo. Kendra is working hard and very slowly, but progressively gaining her own strength at sitting better, holding her head up while sitting, and tolerating lying on her stomach longer. The doctors feel she is a very strong type I, but would be considered a very weak type II. We are hopeful and placing our prayers in research to come up with a cure. This is the only disease closest to finding a cure with gene therapy or stem cell research because they know exactly what causes the disease and where at in her genetic components and make up. As you may notice, Kendra will be 1 on Halloween (October 31st, 2010)! I definitely think she, and us, are very deserving of winning your monthly contest. We would love to be able to get some fabulous 1 year old pictures taken with her! We have been following your work, and see that you do a great job. We also met you at your booth in Boscobel at the Blaine Gym, I believe Kendra was probably only a few months old at the time. This has been a tremendously hard diagnosis to deal with. I can't even begin to describe the rollercoaster of emotions. Family and friends are at a loss for words to comfort us, and I can't blame them because I don't know what to say either. We would just love all the prayers and support to open doors for Kendra and helping her live the most healthy and long living, fun life to the best of her capabilities, given her diagnosis and the struggles that it will include."
So...*tear*tear*...Kendra didn't win my August BABY, BABY! contest, but I got a hold of Kristin after reading her e-mail and we set up their appointment and I feel sooo good for being able to do this for their family. I was more than happy to donate my services and I am for sure going to keep praying for Kendra and her family and I'm asking that all of you do the same!
This picture melts my heart! I love how they are looking at each other!
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