Kira was born a healthy baby at 8 lbs. 3 oz. and 18 inches long on November 20, 2005.
Her father and older brother both have neurofibromatosis type 1 (NF1), a genetic disorder that causes tumors to grow on various types of nerves inside and outside of the body, so we always knew Kira could be effected as well.
Given that only 15% of NF1 patients develop tumors inside the body and the ones on the skin usually don't develop until puberty, Kira was diagnosed by her genetic doctor by the number café-au-lait spots (light brown birthmarks seen in NF1) on her body. He recommended that we see an ophthalmologist to check her lymph nodes and to have a MRI of her head.
In September of 2007, Kira’s ophthalmologist noticed her left eye drooping and gave us glasses to correct it, then in January of 2008, we took Kira for the MRI.
Three days later her doctor called and explained that Kira had a tumor on each optic nerve and two smaller ones in her brain. Even though only 5% of NF1 tumors cause problems and have to be treated, the ones on Kira’s optic nerves had grown since September 2007, and it was the pressure of the tumors that made her vision and the movement of her eyes gradually worsen.
Soon after her diagnosis we met with an oncologist who told us about a new chemotherapy protocol at St. Jude Children’s Research Hospital that Kira would qualify for.
We arrived at the Ronald McDonald House® and St. Jude Children’s Research Hospital on March 9th, 2008, and we have been very impressed with the kindness and knowledge of the hospital’s doctors and staff.
Since Kira only has treatment once a week we spend most of our time at the Ronald McDonald House®.
Kira loves the playground, the toy and craft room, and all the new friends she got to meet and play with everyday. We have also greatly enjoyed the different volunteers who have come weekly to cook for us and to do activities like cookie decorating and crafts with the patients and families.
They really help pass the time throughout the week. With the friendly staff and wonderful friends and families, Ronald McDonald House® has been the best home away from home we could have asked for.
- Gwen (Kira’s Mom)