Fundraiser hosted Sunday for teen diagnosed with rare genetic disorder

Published On: Feb 22 2014 06:00:00 AM EST

Ryan McMann (center) with his cousins who have X-Linked Lymphoproliferative Disease, and have either had a bone marrow transplant or are currently having it (Photo courtesy of Lisa Angona).


A fundraiser will be held Sunday for a teen diagnosed with a rare genetic disease called X-linked lymphoproliferative disease, or XLP.

The bone marrow transplant fundraiser will be held Sunday from 1-5 p.m. at Airway Lanes in Waterford for Ryan McMann, an 18-year-old senior at Waterford Kettering.

McMann's mother, Lisa Angona, said there are 10 family members confirmed and possibly two more members that have been diagnosed with XLP.

"Only males get it and females are carriers. XLP impacts the immune system, causing those effected to have compromised immune systems," said Angona. "When they are exposed to EBV (mono), it can be deadly for them. It causes them to have Burkitt or B-cell cancer."

Angona said her son had Stage 2 Burkitt lymphoma when he was 4 years old.

"We did not know that Ryan was born with this until November 2011. My dad has XLP and I was a carrier," said Angona. "We have, from what I have researched, the largest number of males with the disease."

The only cure for the disease is a bone marrow transplant, according to Angona. She said McMann will be the fifth person in their family to have a transplant.

"My dad and uncle are 66 and 68 years old, and are the oldest living males with XLP. Most do not live past 10 years old," said Angona.

Angona said the problem with getting diagnosed is all the boys look fine. She said they seem to always have respiratory problems, are extremely tired and catch everything that they are exposed to, but nothing real alarming, until they get cancer.

"Most doctors do not check IGG levels (immune system levels), which would have shown just how sick they are," Angona said.

Angona is looking to bring awareness to the rare disease. She said most doctors have never even heard of it.

"(University of Michigan) Children's Hospital in Ann Arbor was already researching XLP before my family was diagnosed, and began seeing the doctors there. There is a 9-year-old cousin going through (a) transplant right now," said Angona. "When Ryan graduates in June, he will start the process of transplant right after."

Sunday's fundraiser will cost $20 at the door, giving each person three games of bowling, bowling shoes, two slices of pizza and pop. Angona said silent and Chinese auctions, 50/50 raffles and bake sales will also take place.

A "Be a Match" event held at the fundraiser will also encourage others to join the bone marrow registry list.

"Ryan will be getting his (bone marrow) from the registry list," said Angona.

To learn how to donate and learn more, click here.

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