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.

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