Caring for Kyle!

This page is to raise awareness and support for Kyle and Alicia Leggett as Kyle has recently been diagnosed with Neurofibromatosis, or NF2.  Kyle's 'affliction,' as he calls it, is a genetic disorder that causes tumors to grow on the nerve endings throughout the entire body.  Only 1 in 40,000 people have this disorder, and there is no cure.  The only treatment is to surgically remove tumors as they are found.  The tumors can appear anywhere in the body and grow at different rates, endangering highly sensitive areas such as the brain, lungs, eyes, facial muscles, etc.

Doctors have so far identified 10-15 tumors in Kyle's body, and his first of many surgeries will be a craniotomy on June 5th to remove a tumor that, if untreated, could push into his brain stem.  The surgery will involve a neurosurgeon and an otolaryngologist working for about 8 hours to remove the tumor and the affected nerves to preserve his facial muscles and brain function. However, when removing the tumor, they will remove the auditory nerves along with it, which will result in total loss of hearing in Kyle's right ear. The recovery time is predicted to be about 3 months.  This will involve learning to walk again, because Kyle will lose all sense of balance with the loss of the auditory nerve.  As soon as he is recovered, he will undergo surgery for a tumor that could potentially collapse his lung.

Alicia and Kyle were married last May and moved to Raleigh in August to start their lives together.  Kyle is a special education teacher for children with behavioral difficulties.  Alicia is a special education teacher assistant in a class for preschoolers with Autism.  She also works a second job after school, to help make ends meet.  They don't know many people in the area, as their family and friends are back home in Pittsburgh.  They have a lot of emotional support from their families, but their family already has a lot on their plate: One of Alicia's half-sisters was diagnosed with NF2 a year and a half ago.  She is 16, and has already undergone multiple brain surgeries, which have resulted in almost complete hearing loss and paralysis of her facial muscles.  She now lives in a facility/school for the hearing impaired.  

This page was created by the social committee at Alicia's school, not only to help Alicia and Kyle will this enormous financial burden, but also to show them love and support as they are far from their friends and family.  We encourage you to share this site with your friends and family- every bit will help!  Because of the nature of this disorder, there is no telling how many surgeries Kyle will need in his lifetime, or what the costs will be.  The Leggetts are truly at the mercy of the tumors in terms of how fast they grow and where they appear in his body.  Our goal is not only to help them with the cost of this first surgery, (which will be around $100,000), but with subsequent surgeries that he will have to undergo.  As we said before, the next scheduled surgery, after the craniotomy, will be to remove the tumor that is threatening to collapse one of Kyle's lungs.  After this, it is likely that surgery on his spine will need to be completed as well.  Aside from surgeries themselves, they will have to deal with the costs of rehabilitation/therapy, of future doctor visits and regular imaging to scan for new growth, of gas to and from the hospital, and various other medical bills that will arise in the future.  

While they are quite overwhelmed, Alicia and Kyle are extremely positive, and they are taking this one step at a time.  Please keep the Leggetts in your thoughts and prayers, and thank you for your support!!!


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Kristin Sembler 
Raleigh, NC
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