Funds raised through this fundraising will go towards travel expenses, (this has and is adding up very quickly) & costs not covered by our insurance. It will also allow me to take time off unpaid to help care for her while she goes through this very difficult treatment and surgery. Thank you all in advance for all of your love and support. All donations of any type is greatly appreciated.
Our journey started almost 18 years ago with the birth of our RayRay. Then the only term we knew was arthrogryposis (arthrogryposis is a symptom not a diagnosis). Four years later after consulting with a geneticist and being told that there was only a 0.1% chance of having another child with arthrogryposis, we decided to have another child. About a year later our KaiLynn was born…… with arthrogryposis.
It wasn’t until RayAnne was 10 and KaiLynn 5 we were introduced to a Facebook support group for arthrogryposis. There we learned about Dr. Judith Hall who practiced out of Canada. Through emails and phone conversations with her we were able to work with our geneticist in Arizona for a potential diagnosis. Blood was drawn’ and sent off to Germany. Three months later we finally have an actual diagnosis, Escobar Syndrome. A very rare genetic disease. So rare that there are only 200 worldwide known cases, and we have 2 of them. Although there is no cure for Escobar Syndrome different aspects of their disease can be treated through surgery and therapy.
Today we have 2 amazingly strong girls who in the last almost 18 years have undergone a combined 26 surgeries and countless hours of speech, physical, and occupational therapy. Life for them is very different than you or I know it. Everyday tasks that you or I take for granted is rather difficult for them or they just can’t do at all. Things like tying your shoes or taking a shower on your own.
Our most recent battle(s):
Both our girls have scoliosis. RayAnne’s curve is about 23˚ has not gotten worse through her growth and she will be fine without surgical intervention.
However, KaiLynn’s curve started to get progressively worse through the years. We attempted casting and bracing, but this started causing more harm than helped her. What started out at a 32˚ curve has now turned into an “S” curve causing her to have a severe kyphosis also. Her curves now sit at 107˚ in her upper and 106˚ in her lower curve. The severity of her curve is causing her a lot of physical pain, respiratory, and GI issues because basically everything is smooshed up in her little body.
Due to the complexity of her curve our amazing orthopedic surgeon who has been our girls’ surgeon for the last 17 years felt that going in and doing a spinal fusion as her curve is right now we would risk paralyzing her. Our best course of treatment would be to place her in halo traction for up to 8 weeks, then going in to do the spinal fusion. He also advised that nowhere is Arizona is licensed to do extended halo traction treatment. We were referred to California who turned her case down due to the complexity of her curve.
Next, we were referred to Texas who agreed to see her. We packed up and made our way to Dallas. After literally an entire day at the hospital they felt they will be able to take on her case.
Texas Scottish Rite Hospital has approved our girl to receive halo traction treatment and spinal surgery for her severe and complex scoliosis. This mean that we will need to be in Dallas, TX for a minimum of 10 weeks possible up to 3 months. When we are able to take her back to Arizona she will continue her recovery and therapy.
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