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Taking down cancer with Liam: Pleasant Valley boy, 10, has lymphoma, genetic disorder

It’s hard enough to learn that your child has a genetic disorder. But when that news is followed by a diagnosis of cancer, it would send you reeling.

Jessica and Ryan Everett, of Polk Township, were just coming to terms with finding out that their 10-year-old son Liam had a rare genetic disorder, when they were hit with the news that Liam also had lymphoma.

“We were told in June that Liam was a carrier for XLP which would affect his immune system,” said Ryan Everett. “A few weeks later Jessica called me at work and said she had found a lump on Liam’s neck.

“The geneticist told us to take him to his pediatrician right away, but they sent us straight away to CHOP.”

Children’s Hospital of Philadelphia luckily had every base covered for the Everetts and Liam.

Since June, Liam has had surgery and multiple rounds of chemotherapy. Liam will have his last round of chemotherapy in the coming week and his father says he is expected to be classified as “cancer-free.”

Liam still has a major hurdle to overcome.

The XLP (X-linked lymphoproliferative syndrome), or Duncan syndrome is an X-chromosome-linked immunodeficiency disorder, which is very rare in the United States, is almost exclusively found in males.

Genetic testing showed that it was Jessica who was the carrier for the XLP.

“Jessica’s family had a larger number of women, so they weren’t aware that they were carriers,” Everett said.

According to the CHOP website, a woman carrier has a 50 percent chance of passing the mutation on to her children.

Once the doctors at CHOP give Liam his “cancer-free” thumbs-up, they will begin preparing for his next step in beating the XLP.

Liam will require a bone-marrow transplant to wipe out any future recurrence of cancer or any of the many other maladies that can result from XLP.

Liam is lucky to have two younger sisters, Emma, 9, and Fiona, 7.

“When the girls found out that possibly one of them would be a match to donate bone marrow to Liam, they were very excited,” said Everett. “Emma asked that if they were both a match, could they each give a half.”

As it turns out, Fiona is a perfect match for her older brother and is very happy to be able to lend a hand in making her brother healthy. Emma, while disappointed that she won’t be the one donating, is looking forward to lending a hand to help around the house while her brother recuperates.

“I get to wash the dishes, and if he shows me,” she says pointing to Liam, “I can also do the laundry.”

The bone marrow transplant will require a long hospital stay for Liam, and his family is planning accordingly.

“I remember lying on the floor of the hospital trying to get some sleep when my cousin called and asked if it was OK that she had started a GoFundMe campaign,” Everett said. “I was so surprised.”

The Everetts were at first a bit embarrassed by the fundraising, but with Ryan looking at being out of work for up to three months while Liam recovers from the transplant and the additional cost of travel to and from Philadelphia, the family recognizes that they will need the help.

To offset what they will receive from donations and help themselves, the family has been collecting soda can tabs for the Ronald McDonald House at CHOP.

“We understand that the Ronald McDonald House uses the tabs to help pay the utility bills,” Everett said. “We literally have a minivan full of tabs at this point.”

Liam is a fifth-grader at Pleasant Valley Intermediate School and the school, along with the other Pleasant Valley campuses, have helped to collect the tabs.

In addition to the GoFundMe campaign, “Take down cancer with Liam,” there is a Facebook page by the same name.

Shortly after his surgery, Liam told his parents that he was glad that his scar was on his neck.

“We asked him why,” Everett said. “His response was, ‘So when people ask me about it I can say I beat cancer.’ ”

Fiona, 7, left, and Emma, 9 surround their brother Liam, 10. Fiona will be donating her bone marrow to Liam. According to her father, Fiona’s procedure will be done in the morning, and once she is out of recovery, she will be moved to the room where her brother will receive his transplant via an IV. Ryan Everett says that the hospital encourages the family to be a part of the procedure and tells them to look at it as another “birthday.” JUDY DOLGOS-KRAMER/TIMES NEWS
Jessica and Ryan Everett received a notebook from Children’s Hospital of Philadelphia and were encouraged to keep every piece of information with them during Liam’s treatment.