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Welcome to My Page 4NF-Greyson's Pikachu Warriors

Holly Layton

Hi! My name is Greyson Layton and this is my story:


I am six years old and was diagnosed with Neurofibromatosis Type 1 (NF1) when I was 3 years old. Here is a little bit of information about Neurofibromatosis (NF):

NF is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. It is a progressive disorder that affects all races and both sexes equally. Currently there is no cure or effective treatment.

I was diagnosed with NF1 in February 2015. My mom noticed some "spots" that looked like birth marks in many places on my body. These "spots" are called cafe-au-lait spots. My mom did some research and found these "spots" to be symptomatic of NF. Luckily, my mom pushed for a referral to the St. Louis Children's Hospital where they have a wonderful team of professionals lead by doctor (Dr. Gutmann) who specializes in NF. This is where I was diagnosed with NF1. I enjoy my trips to the Children's Hospital! They have trains and all kinds of neat stuff for me to look at!

I made a trip to the Shriner's Hospital in St. Louis, in March 2015 to check my knees and feet. Dr. Miller said that my knees and feet look great and with the help of some shoe inserts called chipmunks, my balance will improve. I will see Dr. Miller again soon to check up on my feet and knees. (NF can cause bone deformities in the bones in my legs)

I also see a pediatric optometrist (Dr. Hoekel) at St. Louis Children's Hospital. Dr. Hoekel checks my eyes and checks my optical nerves for tumors. I saw Dr. Hoekel in April 2017 and he says that my eyes look great! (NF can cause tumors to form on the optical nerves)

I had a brain MRI in February of this year, due to recurring headaches. I am happy to report that my brain looks healthy with no tumors at this time. (NF can cause tumors to form anywhere in the body)

And finally, I continue to see both a physical therapist (Sarah Kietzman) and an occupational therapist (Candy Richardson) , redularly to help me with complications such as: nerve pain and stretching for stiff ham strings, feet, etc. and fine and visual motor skill delays. (NF is what causes my motor delays and nerve pain)

I am a very brave little boy! I do not cry at any of my appointments. I usually am smiling and entertaining the doctors and nurses.

Please pray for me and my family to stay healthy and strong!

My story is short thus far, but I am hopeful that they will find a cure and or effective treatment for my disesase. I know that with your prayers and help, God will take care of me and my family through my journey.

My family has planned the 3rd annual Great Steps 4NF 5k run/walk for September 23rd, 2017 at Manner's Park in Taylorville, IL. My family is walking in Great Steps 4NF and fundraising in my honor. All proceeds from this walk will go to the NF Midwest Foundation.

NF Midwest is the local regional non-profit that C.A.R.E.S. to help improve the lives of people with NF. By donating to my page, YOU are helping in this mission.

C- improve clinics

A- raise awareness

R- fund research

E- increase education

S- offer support

If you would like to join our team at the walk, you can go to www.GreatSteps.org to register. If you are unable to make it that day, you can still support our team by donating here. Many thanks for your generosity.

Thanks for listening to my story and I hope you will join me and my family on our journey with NF1.

Sincerely,



The Layton Family

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$2,650
raised of $2,500 goal
 

Recent Donations

$25.00
1. Holly Layton
$25.00
2. Steve And Beth Markwell
$1,000.00
3. Walmart
$500.00
4. Macon County Sheriffs Office
$250.00
5.
$250.00
6.
Captain of

Team Greyson's Pikachu Warriors

$4,600
$1,000