A Ray Of Hope
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A Ray Of Hope
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October 15th
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A Relative, Cause & Family To Remember
(As told by Cheyenne ) The whole story started one day when I was about 2-1/2 years old. I woke up one morning but couldn't get out of bed. I called for my mom because my leg wouldn't work right. They took me to the doctor that day but she didn't think anything was wrong. A couple weeks later, the same problem occurred so they took me to the doctor again, this time she knew something was wrong. We were sent to see a Neurologist with the NF clinic at Cardinal Glennon where he ran some tests and discovered that I had Moya Moya. While they were getting ready to do the surgery to improve the blood-flow to my brain, they discovered that I also had kidney problems. Before they could fix it, I had lost my right kidney. After removing my kidney, they performed the first of two brain surgeries to increase the flow of blood to my brain. Later that year, they discovered that the other side of my brain was getting worse so they repeated the surgery on that side. The following year, they sent me to Michigan to fix the blood vessel feeding my remaining kidney because the blood vesses was closing in on itself. Justin also has NF and was diagnosed with an Optic Glioma (brain tumor) as well as the renal artery stenosis just like I have. In 2004, Justin had the same surgery in Michigan because his blood vessel was closing in on itself. Later that year, I had to return to Michigan to have my Aorta fixed. There was a section of my Aorta that was closing in on itself so Dr. Stanley cut it open and put on a patch just below my rib cage all the way down into one of the Iliac arteries feeding my leg. We are still struggling to keep my blood pressure under control by taking about 50 blood pressure pills a day (not an exaggeration) and they are still watching Justin to make sure that his blood pressure stays normal and that his Optic Glioma does not develop any further. If his Glioma starts to grow, it could cause him to go blind among other problems. Luckily, my older sister Amanda does not have NF so she has not suffered any of these problems but she is always there to help Justin and I recover from our surgeries. Amanda spends her own money to buy us things to cheer us up and when one of us is in surgery, she takes the other to the play rooms to have fun. Now in 2009, Justin is showing signs that his other ranal artery is starting to close. So we will monitor him more closely now. (Please read the journal @ http://caringbridge.com/visit/cheyenneteeter for continued updates of these past few years) Thank you for visiting our site. Justin and I have been diagnosed with NF1 and both have renal complications. In addition, Justin has an Optic Glioma but luckily he has not had any problems from it. I have also been diagnosed with Moya Moya, which caused me to have at least 3 strokes and I have undergone 5 surgeries. Justin also had one surgery to save his kidney.
To Understand:
The website for information and to donate to Neurofibromatosis is CTF.ORG. The basics of NF is:
Neurofibromatosis
Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, characterized by multiple cafe-au-lait spots (discolored patches on the skin) and neurofibromas (tumors) on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN) is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN) is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
Our Story: http://caringbridge.com/visit/cheyenneteeter
