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The funds raised will be for Children's Tumor Foundation's and the goal of Ending Neurofibromatosis Through Research!
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This is Renae Stob, a happy, sociable 12 year old. She was diagnosed with NF 1 when she was 2 years old. Her doctor noticed some café au lait spots, and knew that she had speech delays. The wonderful doctors in the genetics clinic at Children’s Hospital in Seattle gave us the diagnosis, and Renae’s family started on the journey of living with NF1.
When Renae was 4 years old, she had surgery on her brain to place a shunt to treat hydrocephalus, a life-threatening condition. We don’t know the cause, but it is probably from some tiny tumors that block drainage of the fluid in her brain. Every year she has an extensive sedated MRI of her brain, to make sure her hydrocephalus is not back and to monitor an enlarged optic nerve and many other lesions in her brain. She has some other medical issues and we have been to many of the clinics at Children’s, but none of them are serious or life-threatening for now.
The biggest issues for Renae are her developmental disabilities. Her speech is so limited that only her family and others who know her well can begin to understand what she is saying. She has many other learning and developmental disabilities, some from NF and maybe other causes that are unknown. Her future is uncertain and she will never be able to live independently.
But do you see her smile? It is contagious, and someone recently told us “I love Renae – she makes me smile, even when I don’t want to!” She has taught us to live joyfully, enjoy the little things in life, and reach out to everyone around us. We will deal with new medical issues as they come, and hope that NF research will bring new treatments that will help Renae if she needs them, and also help thousands of others with serious tumors and pain caused by NF.
Renae’s family, especially her dad, has been privileged to work with people in the CTF organization. Through fund raisers in Washington state over the past 6 years or so, we have been able to raise awareness about NF, and have helped to fund an NF clinic at Children’s Hospital that is helping many, many families deal with new diagnoses and help manage their care for all the different manifestations of NF. |
