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Making the comeback

The JMU Family unites behind two brothers’ rare syndrome


by Amy Crockett (’10)

 
Kulman family

SUMMARY: Ali (’03) and Dave (’96) Kulman launched the Children’s Organ Transplant Association campaign in honor of their sons Jacob and Eli, who have IPEX Syndrome, a rare immune disorder that has no cure.


When doctors told Ali (’03) and Dave (’96) Kulman that their two sons likely would not live to see their 30th birthdays, they had no choice but to give bone-marrow transplants a try. 

In 2018, Jacob and Eli — ages 10 and 7 — were diagnosed with the rare IPEX Syndrome, a life-threatening genetic disorder that causes the immune system to attack its tissues and organs, often affecting the intestines, skin and endocrine system.

Two years later, the Kulmans launched the Children’s Organ Transplant Association campaign in honor of Jacob and Eli. Ali’s best friend in the Marching Royal Dukes, Catrina Tangchittsumran (’03), stepped up as the fundraiser’s community coordinator. Together, they have raised nearly $100,000.

The Kulmans’ lives significantly changed in November 2020 when the boys received an anonymous bone-marrow donation through Be the Match, a national marrow donor program. Jacob and Eli responded successfully to the transplants; daily checkups at the hospital are now monthly.

Marching Royal Dukes
Ali Kulman (’03), left, and Catrina Tangchittsumran (’03) met in the Marching Royal Dukes in 1999.

“Be the Match has a huge impact for the people who need bone-marrow transplants,” Ali said. “There are a ton of kids who need donors, but their matches just aren’t in the database yet.” Joining the donor registry is as easy as ordering a cheek-swab kit.

Because of ongoing treatment and incidental costs (travel, food and accommodations) to receive medical care, the Kulman family continues to lean on the COTA campaign for support. The boys are in remission, but doctors don’t know if the bone-marrow transplants will last.

The Delta and Omicron variants of COVID-19 delayed the boys’ return to school. In March, they attended in-person class for the first time in two years. “They’re pretty social, and they were really excited to actually be with their classmates. They’re on the soccer team, and they just get to be normal kids,” Tangchittsumran said.


Consider changing a life by joining the marrow registry: http://bethematch.org, or helping the Kulman family overcome IPEX Syndrome: https://cota.org/campaigns/COTAforEandJ.

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Published: Friday, August 26, 2022

Last Updated: Monday, September 5, 2022

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