Help Kynzleigh Create Unforgettable Memories
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Seeing my son play with his friend Kynzleigh at our school district’s “Sages Strut” fundraiser, I felt like the world’s problems were solved. They made each other laugh, ran around the track, and danced on the soccer field. Meeting her mom, Samantha, only reinforced my optimism for humanity. She told us that Kynzleigh often talks about playing with Calvin at recess: their friendship goes all the way back to last year in Mrs. Quick’s kindergarten class. That’s when I first met Kynzleigh and experienced her joyous personality. After some reflection, I feel inspired to raise money for Kynzleigh’s family as they venture to Orlando for the MPS Conference and attempt to make some memories at Disney. MPS-1 or Hurler Syndrome is a rare genetic condition that Kynzleigh was diagnosed with at a very young age.
Samantha told me Kynzleigh has the most severe form of MPS, but Hurler is the only one with treatment options. This genetic mutation means she was born missing an enzyme that breaks down specific molecules. The molecules (Glycosaminoglycans or “GAGs”) build up everywhere in her body: brain, organs and bones.
When Kynzleigh was about three months old, she started receiving artificial enzymes through weekly infusions. Unfortunately, the artificial enzyme doesn’t cross the blood brain barrier, so, to protect her brain, they required a transplant. At six months old, she went through a week of chemotherapy treatments and then had a stem cell transplant. Her body now produces the enzyme she was missing, however it doesn’t cure the MPS-1. The disease is progressive, and transplantation doesn’t protect her bones.
The anniversary of her transplant is November 5th, so it’s a special time of year for Kynzleigh’s family. In honor of her transplant anniversary, I'm hoping to raise money for what Kynzleigh calls her “fun fund.”
All donations will go directly toward making Kynzleigh's trip to Orlando and Disney as magical as she deserves: truly, a trip fit for a princess.
Casey Crowhurst
Learn more about MPS-1
Donate to the MPS society
Kynzleigh's Facebook Page
The Kennedy Ladd Foundation https://www.facebook.com/TheKennedyLaddFoundation
Organizer and beneficiary
Casey Crowhurst
Organizer
Monticello, IL
Samantha Brownfield
Beneficiary