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Couple Devastated by News That Their 3 Kids With a Rare Genetic Disease Could Die by Age 11

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3.0 from 32 votes
Wednesday, March 21, 2018

When Noreen and Lester Jessop's now-10-year-old son, Daron, was about 13 months old, the pair realized that their boy wasn't developing as quickly as or on track with other kids his age when it came to walking. From that point on, the Jessops took Daron to various doctors to figure out what was causing the developmental delays, but to no avail. It wasn't until about six years later, when their twin girls who were also developing late turned 2 and Daron had started to regress, that Noreen and Lester received a heartbreaking diagnosis from a geneticist.

All three of their children had a life-threatening, rare genetic disorder called pantothenate kinase-associated neurodegeneration (PKAN), which affects their vision, movement, speech, and intellectual functions — and has an average life expectancy of about 11 years old.

"The doctors told us to simply make the time count. We may not have much of it. That summer was the hardest time in our lives that I can ever remember. When we got the call that confirmed what this disease was, it was so gut-wrenching we seemed to be barely getting from day to day," Noreen told People. "At first I thought I was strong, but the next day, after researching more about this disease, I sat on my closet floor and cried for hours. The kids would give us hugs when me or Lester would get emotional about it."

Since the deadly diagnosis, Noreen and Lester have been trying to find a way to treat this disease. In January, they were given some hope — research that could change their kids' lives had come in. "Not only had they found something that could stop the progression of the disease, but could start the healing process, not only for their three children but for over 200 more children in the US that are suffering from this disease," reads the family's fundraiser through Spoonbill Foundation — a nonprofit that helps support kids with PKAN and their families.

Now the Jessops are trying desperately to help Spoonbill Foundation reach the goal of raising $2 million to develop the drug that will help treat children with the disorder. "We are racing the clock to raise enough money to get the clinical trial going," Noreen said. "It's very real. This thing is serious. You never know when the lungs will stop working or other major organs that depend on the muscles."

To support Spoonbill and the Jessops, visit their GoFundMe page, Give So They Can Live.

Contacts:
POPSUGAR Inc.
11 Sutter Street, 16th Floor,
San Francisco, CA 94104,

Phone: (415) 391-7576
Email: community@popsugar.com

Source: POPSUGAR Inc.
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3.0 from 32 votes
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