Thursday, April 24, 2008

May is NF awareness Month


This morning was a rough one for my youngest son Hayden. It was a tearful morning for him. He was so adamant about not going to school today. He has many of these morning where he begs me to home school him and not make him go back to school. Even though I know it is socially and developmentally the best thing for me to force him into school, I do have some sadness when I have to do it. Hayden is often the center of some bullying due to a genetic condition he has. Hayden has a genetic disorder called Neurofibromatosis or NF.


NF encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF can cause tumors to grow anywhere on the body. There are 3 different forms of NF, which Hayden suffers from NF-1, the most common form.

NF-1 also know as von Recklinghausen NF or Peripheral NF. It occurs in 1:3,000 births. Characterized by multiple cafe'-au-lait spots(look like birth marks) and neurofibromas(pea-sized tumors) on or under the skin, enlargement and deformation of bones and curvature of the spine(scoliosis) may occur. Occasionally tumors may develop in the brain or cranial nerves, or on the spinal cord. About 50% of people of NF also have learning disabilities.

Hayden's main skin problems is multiple cafe'-au-lait spots, to numerous to count and a few neurofibromas. He has some bladder issues which we have discovered is not to uncommon with individuals with NF. He is fairly clumsy but his coordination tends to be getting better as he gets older. Fortunately, I believe we have missed the learning disabilities but he does get some help at school for speech and occupational therapy to help with his fine motor skills. Even with these problems, I know Hayden is destined for greatness. God choose the right one of my children to give this disorder to because even though Hayden does have some social hard times, he has a certain drive about him and his love for God will see him through. His future plans are to be a policeman, a fireman or a vet. He loves animals so much and they always seem at ease with him.

May is NF awareness month, so if you are looking for a good cause to donate money to or to support, please keep Hayden and those like him in mind. You can donate or look up more info on NF at the Children's Tumor Foundation website, www.ctf.org for NF research so that we can help those all affected by it.

2 comments:

In_spired said...

Neecie, you have such a great attitude! You inspire me. Hayden is a precious little soul and you're right...he's destined for greatness!! Love you...

Tammie said...

I'm praying.

Bullying creeps me at the deepest part of my marrow! Just this week in the children's ministry, a fourth grader wrote this prayer request..."to not get heart by people". Isn't that such an accurate way of spelling hurt? Cuz 'words' forever do hurt your heart!