For the next nine months, David and Alison Kulman of Falls Church will have to relocate their family of four close to the Children’s Hospital of Philadelphia so their sons — eight-year-old Eli and six-year-old Jacob — can receive life-saving bone marrow transplants. Despite the uncertainty that lies ahead, an outpouring of support from the Falls Church community has buoyed the family’s spirits and will help defray the Kulman’s considerable medical costs.
“Two of the most vivacious, charming, silly, and caring brothers that you will ever meet,” were how their parents described Eli and Jacob, students at Thomas Jefferson Elementary School and Mount Daniel Elementary School. And that spirit has shone through their lifetime of debilitating autoimmune disorders: deadly food allergies, chronic infections (including MRSA), esophagitis, thyroid disorders, Ehlers-Danlos syndrome (a connective tissue disorder), alopecia, eczema, anxiety and delays in growth.
According to Alison, each of the boys has had to endure, “25 under-anaesthesia procedures apiece,” so far in their young lives, “plus so many illnesses and hospital stays.”
In 2018, doctors diagnosed both of the boys with an extremely rare genetic disease known as IPEX Syndrome (for Immunodysregulation Polyendocrinopathy Enteropathy X-linked). Caused by an obscure genetic mutation in the FOXP3 gene, the syndrome interferes with T cell production and essentially turns the immunity system against the host.
Chances of having the genetic mutation are less than 1 in 1.6 million. In the whole world, only 300 cases are known — ever. “The prognosis for kids with IPEX is bleak: doctors have said that, without treatment, the boys may not live past the age of 30,” the Kulmans wrote in a Sept. 29 family blog post. “Luckily, bone-marrow transplants have shown to be a successful treatment — or even a cure — for IPEX Syndrome.”
For the family, it’s been a roller coaster of emotions just getting to this stage in the boys’ treatment.
As the two brothers continued to suffer illnesses, treatment windows narrowed. Procedures set for the summer had to be postponed because of the Covid-19 pandemic. With the risk of exposure to the novel coronavirus, everyone had to stay at home — unless they had to see a doctor. Promising gene therapies are not yet fully tested.
Doctors presented the family with a Catch-22 scenario: The kids would have to be “well enough to receive a transplant, but sick enough to need it — and not be killed by the process,” Alison said. “So, since we never know what cold is going to turn into pneumonia, or what infection might come along, we needed to do this before things got worse.”
To find bone marrow donors for Eli and Jacob, the Kulmans turned to BeTheMatch.org, the world’s largest online marrow registry operated by the National Marrow Donor Program. Fortunately, they were able to find an anonymous matching donor for both of the boys. Prior to the transplants, Eli and Jacob will need to undergo chemo treatments in Philadelphia so their immune systems will accept the shock of the transfusions.
And a stroke of good fortune for the Kulmans was a remarkable 501(c)3 charitable organization called the Children’s Organ Transplant Association (COTA), which stood by ready to help the family and community raise the considerable funds required to meet expenses (with 100 percent of donated funds dedicated to the children’s care.)
Though the family has medical insurance, out-of-pocket costs will be huge.
The bone marrow procedures alone can cost as much as $1 million apiece, before insurance. The pricey costs of associated travel, rental expenses, pharmaceuticals, follow-up procedures, mental health counseling, and other contingencies must also be paid. Moreover, the expenses will continue over the boys’ lifetimes.
Setting their initial community fundraising target goal at $100,000, the Kulmans knew they had a daunting task before them, but also that such an amount could only offset a fraction of the total lifetime costs. “We didn’t want to look greedy,” Alison said, “so we set the goal at the lower end, not really knowing what it was going to look like.”
The Kulmans were also able to assemble a highly effective and motivated group of close friends to serve on their COTA Committee (taking care of communications, event planning, logistics, and web/blog development). COTA Staff members have also been helpful with online support, fundraising strategies, accounting, and community outreach.
Launching a website (COTAforEandJ.com), a Facebook page, a Twitter account and a blog, the team began planning, promoting and holding a series of fundraisers in the community, including: a fall photo fundraiser, a Bingo night, t-shirt and wristband sales, a paint night, a 31 gift bag event and a virtual magic show. Falls Church businesses, the school PTA, and school leaders have all stepped up to help spread the word.
To their delight, the Kulmans have so far raised over $70,0000.
“We are absolutely blown away by the support we have received from COTA in honor of the Kulman family,” said Catrina Tangchittsumran, the Community Coordinator for the campaign. “We’ve been pretty frenetic in our pace, trying to keep up because people have just been so generous in both their contributions and also sharing the information, spreading the word, and telling family and friends about our events…It’s been a really wonderful response.”
For Katie LaBrie, the website coordinator on the COTA Team, the success of the Kulmans’ COTA campaign so far is clearly due to the remarkably appealing qualities and spirit of the whole Kulman family.
Of Eli and Jacob, she said: “There’s a reality to having such a life-altering condition — so, of course they’ve had to deal with that — but, they’ve rolled with the punches….They are always the most smiley kids you’ll ever see.”
They “love school, reading, hanging out with friends, dancing, and spending as much time in front of a screen as their parents, Ali and Dave, will allow.”
LaBrie describes Alison and David as a “Super-Mom” and “Super-Dad” who are extremely generous in their support for their kids and for others.
“Just the fact that we’ve raised [the funds] we’ve raised in such a short amount of time, I keep telling Ali and Dave, it’s a great testament to who they are. They’re very personable people and they make connections very easily. And, not just acquaintances. They really do become good friends to the people they meet. So, everyone’s willing to give back.”
“Falls Church is such a unique little city,” LaBrie continued. “It has a great PTA for all the elementary schools together and they’ve been sending out messages and tweeting and things like that…. More people than I can count have offered to do things to help the family get ready for the kids’ procedures.”