A 3 year old with a rare disease


A Topeka boy is battling a rare disease called Neurofibromatosis.

Kansas First News reporter Vanessa Martinas spoke with his family on how the diagnosis is changing the way they.

When 3-year-old Jack Morgan was just 6-weeks-old his mother noticed spots on his body.

These spots are Camila, a sign that he has Neurofibromatosis or NF.

“You know we’re just going to take each battle as it comes,” his father John Morgan said.

He wasn’t diagnosed until 2 weeks ago because not many doctors in Topeka have heard of the disease.

The family will make trips to Kansas City so they can see a specialist.

“You know it’s all kind of sinking in to me, you know until he was officially diagnosed i you know just kind of thought he’s a healthy little boy,” John said.

The Children’s Tumor Foundation says there are three forms of NF.

Each has the ability to create tumors any where in the body.

The disease can be genetically inherited.

In some cases, like Jack’s, it’s the result of a spontaneous mutation during the earliest stages of life.

“He does have the learning disabilities that also goes along with this disease,”his mother Darlene Morgan said.

Jack has attention deficit hyper activity disorder and seizures, both are symptoms of NF.

He also has a tumor in an optical nerve.

“I think with this disease it’s really a wait and see disease it’s nothing that they can predict, the path of what he’ll experience,” Darlene said.

His big sister, 10-year-old Katelyn just wants to take care of her little brother.

“If he doesn’t like get what they’re doing in there maybe at home I can try and help him a little bit,” his sister Katelyn Arnold said.

The family plans to set up a savings fund in case Jack has an emergency.

The disease can cause tumors to grow in both ears.

Which can cause deafness and severe balance problems.

  • http://siemprehazloquetienesmiedodehacer.wordpress.com 1920sass

    Hi, I don’t know if you’ll see this but I am a 23 year old living SE of you in Baldwin City and I have NF2. I want you to know that not all hope is lost. I serve a mighty God and will keep you in my prayers! In the meantime, know that surgery isn’t always the best answer or only option. I see naturopathic doctors and homeopathic doctors and I’ve never felt better! Your son should go gluten free (to help with the ADHD) and dairy and animal free to help with the tumors.
    -Allyson (j a n e l i z z y . a n n e @ g m a I l . c o m -no spaces, if you have questions)

  • roberta miller

    Please join my support group on Facebook. Nf Kansas

  • Shawna Smutzler

    My Daughter Hailee was diagnosed at 3 she’s 9 now. KC Childerns Mercy sent us to St. Louis children’s we see Dr. Gutman he specializes in NF. We go every 3 months. We live in Lecompton right outside of Topeka. My daughter has the cafe’ ol lait spots, lisch nodgels( on the eyes), optic Glioma, tumor on the optic nerve, Brain tumor on the hypothalamous, misplaced artery, ADHD, Mood disorder, speech delay, mass of nureo fibromas in the neck, learning disabilities, balance issues so much that goes along with NF. Prayers for this family. You guys are not alone. Go to NF Kansas and join our Facebook parents that struggle with you. Thanks Shawna Smutzler

  • Angel

    John & Darlene we live in ElDorado and there are many resources in your area for support and we also have Great Steps 4NF walks you can attend. You can email me at blueangel8740@yahoo.com

  • bizigal

    It will get better…I finally got my 19 year old with NF1 to college!

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