HOLLADAY, Utah — A family in Holladay has just days to try to find a match for a bone marrow donation and save their young son’s life.
Though you’d never know it by looking at the vivacious young man, 3-year-old Kiri Pok has been diagnosed with cerebral adrenoleukodystrophy (ALD), an aggressive and potentially fatal brain disease.
"That's mine!" young Kiri said, laughing and playing with family just as any other 3-year-old would do.
Jumping on the trampoline and showing off his front and backflip tricks and just how high he can jump, he seems like any other healthy toddler: rambunctious, curious, playful and full of joy.
But Kiri has a big task at hand, helping stuff envelopes and sending out kits with his family as they all search for a possible match that could press pause on the progression of a devastating disease.
"It’s really, really frightening," said his mom, Jazmynn Pok. "There are just so many unknowns. It’s just a very scary thing for a kid to go through."
Jazmynn said they felt fortunate that their son was actually screened for the disease when he was born, learning that he had the potential to develop cerebral ALD early on, and since then, they've been taking him for routine checkups every six months.
"We went to one of our routine MRI screens last week, and it came back showing signs of disease progression in the brain," his mother said.
It can cause loss of vision, motor function, the ability to speak or walk, and any of the things a blockage in the brain can disrupt.
"Cerebral ALD can be a really fast-moving disease, so it can be a matter of days, weeks," Jazmynn explained. "When we have the bone marrow transplant, it stops it, but it doesn’t fix any damage that’s already taken place."
They're hoping that someone will come forward to donate and be the match.
"The donor can be anywhere in the world. They don’t need to necessarily be related to you or share anything with you, but it’s like billions of people in this world and it’s just one random person maybe that could be a match," Jazmynn said.
The family has targeted Sept. 8 as the ideal date for a bone marrow transplant. With screening and processing time figured into that, they realized they only have about 10 days to find their perfect fit.
"The hardest part right now is that we need a bone marrow donor. It’s very difficult. The odds are very low," said RP Pok, Kiri's grandfather. "But we have to keep doing what we have to do. There are currently 39 million people registered and we don’t have a match yet."
RP says they're hoping a simple cheek swab from a new donor may be their jackpot.
"We’ll take everybody right now," he said.
The family is offering up kits and sending out and delivering them to anyone who wants one.
"You scan the card and it takes you to the registration, and it takes about three minutes is all," RP said. "And from there, you have a kit just like this with two swabs... You swab the inside of your mouth and you put it in the envelope, and it’s already prepaid, and put it right back in the mail and the registry will get it."
If you’d like to see if you’re a match for Kiri or if you’d like to donate money to help the family with medical costs, you can find out more information at HopeForKiri.org.
INFO FROM WEBSITE:
If you are in Salt Lake or surrounding counties, swab kits can be picked up at the following locations:
THE CLIFF DINING & PUB - Draper
12234 Draper Gate Drive | Draper, UT 84020
Mon - Thur : 4pm - 10pm
Friday : 4pm - 11pm
Saturday : 10am - 11pm
Sunday : 10am-9pm
Realty ONE Group Signature - MIDVALE
7650 S Union Park Ave | Midvale Ut, 84047
(801) 208-3800
MONDAY - FRIDAY: 9am - 5pm
SATURDAY: 10am-5pm
SUNDAY : 11am - 4pm
Realty ONE Group Signature - DRAPER
13894 S Bangeter Pkwy Suite 150 | Draper Ut, 84020
(385) 337-1201
MONDAY - FRIDAY: 9am - 5pm
CLOSED Saturday & Sunday
ONE Group Signature - VERNAL
418 E Main StVernal, UT 84078
(435) 781-2500
MONDAY - FRIDAY: 9am - 5pm
CLOSED Saturday & Sunday
A NEW DAY SPA - MURRAY
4970 S. 900 E. suite J Murray, UT 84117
(801) 272-3900
Mon - Sat : 10am-7pm
CLOSED Sunday
For after hours call or text RP 801-633-1990 or if you have a large group and/or business, please call to arrange pickup/delivery.
For those Outside of Salt Lake County
JOIN THE BONE MARROW REGISTRY
Due to the specific condition of Kiri's case, ONLY donors between the age of 18-40 qualify to register.
Join KIRI's Donor Registry
A SWAB KIT WILL BE MAILED TO YOU.
