Pearl family’s journey of helping save lives to begin a new chapter in Utah

EUREKA, MO - The Pearl family has had their share of twists and turns.  The Eureka family packed their bags and recently moved to Utah.  Their time in the St. Louis area made headlines but not for reasons they ever wanted.  Mark and Diane Pearl fought to find life-saving bone marrow matches for not just one but two of their children.

Alex was 6 and Matt was 4 when they were diagnosed with a rare and often deadly blood disease called Fanconi Anemia.  St. Louis rallied behind the family some 20 years ago.  Thousands turned out for countless bone marrow drives in hopes of being a life-saving match.  In those days, donors had to pay a fee to donate and blood was drawn.  Now the process is much simpler with a simple mouth swab.  Those drives didn’t produce a match for the family but did produce matches for more than 100 families in the St. Louis.

Alex and Matt did receive matches from other parts of the country and are now headed to Utah for what they hope will be a new lease on life.  They are now in their 20’s.  Alex was recently diagnosed with cancer but has a successful business called Allywood Pens.     She makes handcrafted wood pens even though doctors at one point told her she would never be able to use her hand.

“The doctor stated that she’d probably never tie a shoe or button a blouse,” said Diane Pearl, Ally’s mother.  “Here she is for hours on end holding large machinery that makes me a little nervous sometimes, but she knows what she’s doing and I’m extremely proud of her.”

Ally will be working out of her own workshop in Utah instead of the family garage in Eureka.

“Sometimes it’s freezing cold because it was in the garage,” said Ally.   “The heat, the humidity was brutal.”

Matt has landed his dream job at the National Ability Center in Utah.  The center is a non-profit that helps those with disabilities enjoy different forms of recreation.

“I’m going to be working with people with disabilities and teaching them how to snowboard, “said Matt.

“We are following their dreams and are excited for the next chapter in their lives,” said Diane Pearl.  At the same time, the family continues to lead an effort to find a cure.

“We’re extremely involved in fundraising or research to help other families and that’s our goal in life is to give back to all of those who have given to us,” said Mark Pearl.

“Be selfless.  You know, go out there and get on the registries of all kinds,” said Diane Pearl.   “You could save a life and what greater gift would you ever have to just be grateful for.”

“It’s the greatest achievement you could do in your life while you’re living, is provide life for somebody else,” said Mark Pearl.

Anyone wanting to be a match can learn more information here.

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