Our daughter, Kimora, was diagnosed with a brain tumor in 2012 when she was 3 years old. She had tumor removal surgery, 6 weeks of radiation, and chemotherapy. Since 2015 we have been NED! She had to re-learn how to walk, still has bladder issues, learning disabilities, and growth issues to name a few.
Now she is 8 (going to be 9 in September). We recently discovered that she has Atlantioaxial Instability. We were told it is very serious and had to get a neck brace to prevent her from injuring herself and becoming paralyzed. She has been wearing once since April. Her top vertebrate are soft and weak due to radiation and will need surgery to fuse her neck to the bottom of her head. We will be going to the Children's Masonic Hospital in Minneapolis (2 hours away). She first goes in for a HALO placement surgery (June 1), followed by a few days in the hospital to start positioning her neck. It will be painful and she will need to be on some stong medications like morphine. Then she will have the fusion surgery which will take a few hours. After surgery, we will be staying at least a week and a half in the hospital while she recovers.
After we get out of the hospital she will have to wear a HALO brace for 2-3 months afterwards. Wearing a HALO will restrict her summer activities, she will not be able to go swimming (or take showers), be in bumpy vehicles (boats & 4 wheelers), or wear normal clothing (we will need to make modified clothes to fit over the brace). Our strong little fighter has gone through so much, we really want to make this summer as comfortable for her as possible.
Donations will help us during our hospital stay (June 1- June 16?) Both of us would like to take work off to be in the hostpital with her. Grandma will also be making frequent trips to the cities (2 hours away). Nana will be helping take care of her little brother and Uncle will be watching our puppy Piper. They will also help us do fun things with her this summer since our activity is so restricted. We are open to suggestions!
I created a Facebook page UNICORNS FOR KIKI to update on progress! Thank you!
- Margaret Sinarath
- Danielle Andersen
- Rhonda Froehling (Berberich))
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