~ Ariadne's Personal Awareness Project: (PAP) # 1 ~

  Personal Awareness Project NF - Mia's Story  Month of March 2011 - NF (Neurofibromatosis)

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Personal Awareness Project NF - Mia's Story Awareness Video

By Co-founder Ariadne Popma

Intro about Mia written from her point of view:

Hi, my name is Mia and I am 4 years old. Like most 4 year olds. I like to play at the beach, coloring, playing games, playing dress up, reading books, playing outside, singing, and being silly. But I am also different from other kids my age. Do you know why? I do... It's because I can say Neurofibromatosis. Can you? Have you ever heard of Neurofibromatosis (NF)? I have...the first time I heard these words was when I was an infant.

This is a picture of me and my daddy. I love my daddy very much and he also has NF. I don't know much about NF, but my daddy dose. My daddy says “Neurofibromatosis (NF) is a genetic disorder of the nervous system, which causes tumors to form on the nerves anywhere in the body at any time. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified. NF also affects each person differently and can be a quiet, non-bothersome disease and it can also be noticeable to peers, painful and life-threatening.” I don't know what that means. Do you?

Mia's Story Written By her dad ( Danny Rashkind)

“I was diagnosed with NF at the age of 31 when my daughter was diagnosed. Her pediatrician noticed that she had several “birthmarks” and started asking us questions, he sent us to see a neurologist who diagnosed us both with NF1. Neither one of us have had any problems with the disease until the summer of ‘08. Mia started having some problems with her eye crossing inward, after many visits to the eye doctor and neurologist they decided to have Mia’s yearly MRI a little early “just to be safe”… on Sept 9, 2008 we took Mia to CHKD for her MRI. That day at 3pm, her neurologist called us and said that he needed to see us at 8:30AM the next day. We were petrified. We will never forget that day. This is the day that we learned that Mia has two brain tumors, Optic Gliomas, one on each optic nerve, the tumor is large enough that it is going into the chasm, which is the area that the optic nerves go through that lead to the back of the brain. These tumors occur in less than 5% of NF kids, but usually are only present on one optic nerve. Since Mia has two and they have become so large that they are in the Chasm. Mia had surgery on September 15th, 2008 to have a port-a-cath implanted in her chest. This is where Mia gets all of her chemo as well as meds or any other lab or test that requires an IV or a vein. We had a few problems here and there with the chemo drugs. The first one 

was a 66 week treatment plan and about half way through we found out that Mia was allergic to. We had to start over from day one and now we are on our third drug. Mia just recently had a follow up MRI and the tumors are stable, the goal of the chemo is to stabilize the tumors, so it is doing its job and at this time Mia is no longer on chemo. Mia has fought two brain tumors, two  years of constant chemo, numerous MRI's, blood work and lots of other tests, and appointments and still has hope for a cure.”

Facts About NF

What is NF?

• NF (Neurofibromatosis) is a genetic disorder that causes tumors to form on the nerves of the body that can appear either internally or externally.

How many kinds of NF are there?
3 types:

• NF-1 (most common form)
  
• NF-2 (second common form)
  
• Schwannomatosis (Newly Identified & Rare; ONLY shows up in 1 in 40,00 births)
  

How common is NF?

• NF-1 appears in 1 in 3,000 births making NF the most common genetic disorder in the world.
  
• This disorder affects at lest 100,000 Americans and affects over 2 million other people world wide.
  
• NF-2 appears in 1 in 50,000 births and both NF-1 & NF-2 there is a 50-50 chance that an individual with NF will pass NF to their child.

How doses an individual get NF?

• NF is a disorder caused by a chromosome change and there are two different forms of NF know as NF-1 & NF-2.

Whats the difference between NF-1 & NF-2?

• NF-1 is caused by a change on chromosome 17, while NF-2 is caused by a change on chromosome 22. Since NF-1 and NF-2 are caused from change on different chromosomes NF-1 and NF-2 do not occur in the same family, meaning a person with NF can only have either NF-1 or NF-2 depending on which type of NF runs in a person's family.

What are the symptoms of NF?

• Multiple birth marks
  
• Freckles
  
• Dark growths on colored portion of the eyes called iris Lisch nodules
  
• Rubbery

    NF-1

• 6 or more cafe-au-lait spots that are 1.5cm or longer for individuals who are in post-pubertal and for pre-pubertal individuals 0.5cm or longer.
  
• 2 or more neurofibromas (any type) or 1 or more plexiform neurofibroma
  
• Freckling in the axilla or groin
  
• Optic glioma
  
• Two or more Lisch nodules (benign iris hamartomas)
  
• Dysplasia of the sphenoid bone and or thinning of the long bone cortex
  
  
  

   NF-2

• Definite diagnoses for an individual if they have a Bilateral Vestibular Schwannomas also know as Acoustic Neuroma.
  
  
• Probable diagnoses if a individual as a history of NF-2 and or have 2 or more of any of the following tumors: Meningiloma, Glioma, Schwannoma or if an individual has any of the following eye conditions: juvenile posterior subcapsular lenticular opacity, juvenile cortical cataract.

What are the effects of NF on an individuals body?

  NF-1

• Blindness
  
• Deafness
  
• Convulsions (seizures)
  
• Loss of balance
  
• Headaches
  
• Hypertension (high blood pressure)
  
• Freckles in the groin area and or underarms
  
• Tumors (most are benign)
  
• Pain
  
• Learning disabilities
  
• ADHD
  
• Bone deformities (scoliosis, dysplasia, thinning of long bones, large head..etc)
  
• Cancer
  
• Itchy skin
  
• Early or delayed puberty
  
• Mental retardation
  
• Stroke (Cerebrovascular Occlusion

   NF-2

• hearing loss
  
• ringing in the ears
  
• loss of balance
  
• facial weakness
  
• headaches
  
• vision change
  
• lump or swelling under the skin
  
• numbness and tingling
  
• weakness one arm or leg
  
• Pain

What types of treatment options are available for NF?
There is no specific treatment for NF, but possible treatments may include:

• Chemo therapy
  
• Radiation therapy
  
• Surgery to remove tumors
  
• Blood test to check counts and levels for patients on chemo & radiation therapies
  
• Genetic counseling

End Note From Mia's Dad & How You Can Help Others affected With NF

For a printable flier about Mia & NF please visit http://struggle-group.weebly.com/documents.html

"My daughter Mia is very excited to run these races with me because she knows we can make a difference. Our lives have been turned upside down by this disease, not all in a bad way though. We have met some amazing people during this journey and we know we will meet many more, as this disease will follow us through life. I hope that in my life time a cure will be found for NF, I don’t want my child to suffer, or her children or anyone for that matter. Please help me by supporting me as I run the Rock and Roll Half Marathon in honor of my very strong, full of life, amazing and wonderful daughter, Mia. I am not out to break any records, I don’t care about finishing first, I care about finding a cure for this disease. Join me in donating, as it may be YOUR dollar that finds the cure for Mia and I!” 
- Danny Rashkind

Donation Page - Children's Tumor Foundation for NF ENDURANCE: http://www.active.com/donate/nfvabeach2011/Drashkind 

 To learn more about NF please visit http://www.nfinc.org/ and the Children's Tumor Foundation at http://www.ctf.org/  

To learn more about Mia check out the facebook page called Can Mia Get 1,000,000 Fans to raise Awareness for Neuro-fibromatosis at 
http://www.facebook.com/pages/
Can-Mia-get-1000000-fans-to-ra
ise-awarness-of Neurofibromatosis/3
52074198785

 Special thanks to Danny & Mia Rashkind 
for allowing me to use their story, pictures, and videos

Sources: Children's Tumor Foundation, NF inc, 
 Can Mia Get 1,000,000 Fans to Raise Awareness for Neuro-Fibromatosis, & Danny Rashkind

Lasted Updated 07/10/12