My Child has Neurofibromatosis

I have received emails asking about my experience with NF. There are so many children who have NF and no one seems to understand it or know how to "fix" it. Why does it happen? No one knows....
I personally had no idea how deadly it was.
My son had a mild case of NF, but it took his life.

So what can one do about NF?
(If you know... let me know so I can let others know. I have not tried any of the following so do not know the effectiveness of the suggestions)

This was sent by a young man who has NF: "look for a book called"FATIGUE,fight it with the blood type diet. " the auther is Dr. Peter J. D'Adamo. Or try to google blood type diets. www.dadamo.com its one of the web sites you should check out. i would 100% exclude everything that contains gluten and or maze thickeners as well."


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May I make some suggestions?
These come from my wonded heart, they are to help with your heart now, and later. Whether you read them to your child when you are old and hair is grey or you read them when you are left alone with only these wonderful memories of your dear child.

I wish to read what Michael did when he was little,
how he responded to people,
I can't remember...
life was sooooo hard! I was the only one taking care of him most the time. My ex husband NEVER helped, he was always an alcoholic and never a husband or father.
If I had just carried around a notebook or notepad in my purse and wrote down fun moments I had with him, today that would be a treasure beyond expression. (make sure you don't do this in a time when you could be having time with your child) and if Michael was alive and still fighting this disease, it would be a fun thing to share with him.

Something else....
I didn't kiss and hug him like I did my girls because it caused him pain when he was little then he thought it "unmanly" when he became a preteen. The best hug I had after he thought it sissy was the last day of his life when he grabbed my face lowered it to his and kissed me then hugged me.... Oh to have had more hugs from him! Don't stop hugging him, if it hurts him... have pretend hugs, that start with a touch and end with hugging the air. Kiss him every night, and every morning.... like a ritual.

This will be a treasure when he is old and you are a grandma... or he is gone and you look back to those wonderful memories.

hind site is sooo clear.....

People can say things that they mean to be helpful, but in fact they cause much pain. This is one thing that you have to learn to let roll off you. Just cuddle him and tell God thank you so much for the special little bundle of love he loaned you, that he let you have in your arms and heart.

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Here are some adults and children to keep in your prayers, as they deal with NF.

Milly age 35, she now has neurofibrosarcomas. Her sister in law and brother are Donna and Alex.

Dylan age 2, needs to have surgery on both his eyes in April 2004, he has high blood pressure, a heart murmur, and his muscles are waisting. His mother is Dawn.

Cindy age 30, just found out she has NF, she has also found out her daughter age 14 also has it.

She saids some things in her email that I have felt also, Why wasn't this found out sooner, and all those symtoms that go along with it were real and not just in the head of the one who has NF. So many ways Michael had to deal with things were because of NF. It is real and has real effects that have to be dealt with in possitive and supportive ways.