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| Stephanie Arnette's Fundraising Page |
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| We are Cameron's family and his team. Cameron was diagnosed with NF 1 when he was 2 years old. Cameron will turn 4 on October 1st.
When one person in a family has NF everyone has NF. All of us worry about Cameron. NF is a progressive disorder. Doctors are unable to determine how much NF will affect a child as their life progresses. NF means that tumors grow through your nervous system. NF can mean learning disabilities, bone defects, scoliosis, neurological impairment, neurofibromas, optic gliomas, and on and on... None of us know how NF will manifest itself as Cameron grows up. Cameron's health is for the day. As parents, we worry about our son's future. Like all parents, we want all our children to grow, love, and find happiness from within. Unlike many parents, our child has a disorder that makes every cell in his body move too fast. Cameron's cells are speeding on a highway out of control and not getting off at the right exits and causing tumors to grow. The facts of NF keep us awake at night, worrying and wondering about our little boy. There are no guarantees in this life, NF is a daily reminder of that. NF means we take nothing for granted.
Cameron is the light of our life. He is a joy and an inspiration to be around. We feel so blessed by him everyday. He is our oldest and his younger sister does not have NF. NF is hereditary, though about 50% of new cases are from spontaneous gene mutation - which is how Cameron has NF. Cameron has a 3 inch Plexiform tumor in his throat and ear, which as of now, is causing him no problems except for some pressure on his breathing tube which causes him to snore and have sleep apnea. Plexiforms are tumors that grow on the nerves and are difficult to treat and unpredictable in how they will “act”. They have found that he has another tumor in his brain behind the optic nerves called a chiasmatic glioma. This tumor has probably been there since birth, and at this point, is the lesser of the two evils. He has brain and orbit MRI’s done every 3 months to check for any changes. This means that he is put under general anesthesia for up to 2 hours. The procedures that he has undergone have been very hard, mainly for us, but he is a real trooper. Cameron has gone through enough. Any NF is too much NF. NF is so variable and no two cases are just alike. There are people who have mild cases of NF and then there are cases where the person is affected severely, some even have life-threatening problems from this condition. It is overwhelming at times to even think about what category our son will fall in.
Our hope, dream and wish is that a cure or some treatments for NF become available. Hearing a doctor tell you there is nothing they can do to help your child is too difficult to digest. Listening to them tell you there is no cure is unacceptable. As a parent you feel helpless, in a situation that is so out of your control. You don't know what to do- How can we help our little boy?
We cannot thank you enough for all you have done already for Cameron. So many of you have shown all of our children how caring and generous people can be to help The Children's Tumor Foundation find a cure. We believe that they will, that the research they are doing now will help our son and so many others that suffer daily with NF. We are in control of this, we will help fuel the cure! We will not rest until this war we wage against NF is won. |
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Total Donations Collected:$3,398.00
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| Goal: $6,500 |
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Sorry.
Fundraising has ended.
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