SMITHFIELD – On the evening of April 23, David Palms and Traci Kuiphoff were setting up to celebrate their son Jack’s fifth birthday. As Kuiphoff wrapped gifts and Palms wrote a birthday card at their kitchen table in East Greenwich, Jack yelled out from his bed. His parents found him unresponsive, suffering from an extreme brain bleed and stroke.
Jack was rushed to Hasbro Children’s, but because of his low platelet count, the Emergency Department couldn’t operate immediately to relieve the pressure in his brain.
“We just had to sit and pray all night long,” said Palms.
Jack was diagnosed with severe bone marrow failure, including a rare bleeding disorder called Acquired Amegakaryocytic Thrombocytopenia, which is defined by low platelets, the components of the blood that prevent and stop bleeding. Since April, Jack has spent every day in the hospital and has received nearly 50 blood and platelet transfusions.
Soon, though, Jack’s body may begin to reject the transfusions. In order to survive, he will need to find a bone marrow donor in the next six weeks. His family is asking everyone between 18 and 35 years old to complete a 2-minute cheek swab to test if they are a match. Swab kits are available to order for free at swabforjack.com.
Jack’s family and supporters were swabbing at the fireworks celebration in Smithfield over the weekend, the town where much of the family hails from.
“There are very few people out there in their daily lives and their jobs that can say they’ve saved somebody’s life, and this is an instance where my son will die if he does not get a bone marrow transplant,” said Palms. “The opportunity to actually save somebody’s life is pretty powerful.”
Because Jack’s immune system can’t protect against diseases, he has to be isolated from many of his loved ones right now. He spends most of his day in occupational therapy relearning how to move, walk, and talk. He recently regained some control of his right hand and invented his own special exercises to practice moving his fingers. “It’s awesome to see how proud he is of every step that he’s making … [he’s] been really an incredible, brave little kid,” said Palms.
Jack’s family describes him as curious and enthusiastic about the world; he loves playing outside, practicing guitar and karate, and his dog Violet. In the hospital, he makes one-handed crafts, puzzles, and LEGO creations.
“He really wants to get home, wants to see his friends again, he wants to go to school again. He wants to just be a kid. There’s a playground across the street—he wants to go on the swing, he wants to go on the slide,” said Palms.
Finding a bone marrow match is difficult for many people with blood disorders, including Jack. Each parent can only be a 50 percent match, and Jack doesn’t have any siblings, who are more likely to be a perfect match. As with 70 percent of patients with blood disorders, Jack will need to rely on a donation from a stranger.
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Following last week’s swabbing stations at the Smithfield and North Kingstown 4th of July celebrations, family members will run a similar booth at the Blessing of the Fleet Festival in Narragansett later this month.
“It’s kind of a race against the clock at this point,” said Palms. “We’re just hopeful that there’s somebody out there that will match with him and can save his life.”
Visit swabforjack.com to join Jack’s donor registry.
