FAIRFIELD, Calif. (KTXL) — Little Kierean and her mom love coming to visit her daddy at work at Lowe’s in Fairfield.
The visits are something the 17-month-old, whom the family lovingly calls Kiwi, would like to continue when she feels well enough.
“Her hearing is affected by it… her eyes are affected by it,” described her dad, Taurean McKelton.
The ‘it’ Kiwi struggles with is something they all just learned the name of three months ago: MPS1 Hurler’s syndrome.
“Her body doesn’t create the enzyme to get rid of the long sugar so it starts to build up inside her bones like a cement,” said Kiwi’s mom Kimberly Jessie.
MPS1 Hurler’s syndrome is a rare, inherited disorder that’s incurable, but a bone marrow transplant could extend her life to age 30, instead of it being limited to roughly about 10 years without treatment.
Jessie said the thought of it all is “devastating.”
“Yeah, that’s probably the best way to put it,” said McKelton, shaking his head.
Finding a match was one challenge Kiwi and her family thought they’d already accomplished, but Monday they got the call that their already secured donor had been deemed ‘not medically well enough’ for the procedure.
Once a match is found, the transplant will demand a six to eight week quarantine period afterward which would keep her parents away from work and in the family housing tied to UCSF Children’s Hospital of San Francisco as they care for Kiwi during that delicate period.
Their time off the job and with her could be longer if there are any complications.
Salon Expressions in Vacaville has done a ‘cut-a-thon’ to raise money to care for Kiwi’s sister and the mortgage and bill payments that will have to be made after Kiwi’s transplant, but the family needs more help.
“Enzyme treatments, you know,” said McKelton. “She gets poked with needles and stuff every week. She’s just still so happy and I just couldn’t be more proud. She’s a fighter. She’s strong.”
To find out more about becoming a bone marrow donor and getting on the national registry check out Be The Match.org.
For those who would like to help Kiwi and her family, click the link to their ‘Go Fund Me’ campaign.