Give So They Can Live

$44,656 of $70,000 goal

Raised by 512 people in 14 months
Ten years ago, Lester and Noreen Jessop welcomed a perfect beautiful baby boy named Daron, into this world. Daron brought with him so much love. He appeared to be like every other kid going through all the normal phases of life, learning to crawl, talk, laugh and play. He was his daddy’s sidekick, he loved to ride in the big equipment and played with his toys as if running his own company like daddy. Everything about Daron seemed to be so normal, that it baffled the doctors that he could never learn to walk on his own.

At age four Daron started to regress little by little each day, he lost his balance more easily and wasn’t able to catch himself when he fell anymore. Right after Daron turned 5, in 2013, Lester and Noreen extended the family with a set of twin girls named Angela and Aubrey. During the first year of their life Daron continued to get worse, it was common to see Daron with a bandage on his chin where it had split open from him falling and bruises on his knees from crawling, as that was his only way of getting around.

During 2014 Lester and Noreen became more concerned with the declining health of Daron and the lack of major milestones with the girls. After many, many visits to the ER and by the suggestion of a doctor, Lester and Noreen started having genetic testing done on all three children.

The genetic testing results started to trickle in, but there was no definite news as to why Daron’s health continued to fade and why the girls weren’t progressing. With every result that had no answers more testing was done. Testing this, testing that, hoping for the best. Lester and Noreen were becoming desperate for answers, every month that passed Daron was getting worse. The year he turned eight, when he should have been going to second grade, his muscles were losing mobility taking away his ability to feed himself and eventually the ability to eat.

Finally, after all the desperation Lester and Noreen were given an answer. Unfortunately, the news was a death sentence for all three of their children. The diagnose was Pantothenate kinase-associated neurodegeneration (PKAN).

Once they knew the diagnoses, Noreen started researching everything connected with PKAN and came across a group of doctors in Portland Oregon that have dedicated the past 25 years to researching this disorder and had treatment in the research stage that could potentially stop the progression of the disease. Noreen and Lester immediately set up an appointment to bring Daron, Angela and Aubrey in to see these Doctors.

On January 25th, 2018 at their appointment at OHSU Hospital in Portland, the doctors evaluated the children and took culture samples of their DNA to continue their research. During the visit with Dr. Susan Hayflick and Dr. Penelope Hogarth, Lester and Noreen were told research results had come in, that could change the lives of their children. Not only had they found something that could stop the progression of the disease but could start the healing process, not only for their 3 children but for over 200 more children in the U.S. that are suffering from this disease.

Now we are joining the journey to get this medication to the clinical trial stage. In order for the medication to be made and the trials to take place, the Spoonbill Foundation, headed by Dr. Hayflick and Dr. Hogarth, needs $2 million in donations. So, we ask you to please search your heart and join us in our Give So They Can Live, fundraiser. If you would like to find out more information about PKAN and these wonderful doctors who have dedicated their lives to finding a cure, please visit http://nbiacure.org/learn/nbia-disorders/pkan/ & http://nbiacure.org/spoonbill-foundation

Follow their journey on facebook @givesotheycanlive

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As of 07/16/18, The Spoonbill foundation along with parents and communities of affected families, have raised a total of $735,914.00. We have joined with them to reach the goal of $2 million to ensure that not only Daron, Angie and Aubrey get the help they need, but all those affected with PKAN, have the opportunity to live.

Our latest fundraising project is the PKAN House of Hope. Tim Kenney, a Southern Utah custom home builder, with New Trend Construction and Bill & Ray Cox, who are local ERA, Real Estate Agents, have come together to build this House of Hope. Saint George suppliers and contractors are generously contributing their time, materials and money to make this happen.

The House of Hope is being built through donations and once it has been sold, will be donating all proceeds to the Spoonbill Foundation, to give all the kids affected with PKAN a bright future!
Thank you for being apart of our journey!
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If you want to follow the journey of these three beautiful children follow their facebook page @givesotheycanlive

Thank you again for your donations and support to this cause!
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Thank you everyone for your generosity! Because of YOU we have raised $18,645 through the go fund me page, and because of everyone who supported the Vault family fundraiser for the Jessop 3, we are $95,450 closer to our goal! THANK YOU! This money is sent directly to the Spoonbill foundation where they are working hard to get medication ready for all the kids affected by PKAN.
Vault Family fundraiser raised $95,450!
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$44,656 of $70,000 goal

Raised by 512 people in 14 months
Funds raised will benefit:
The Spoonbill Foundation
Certified Charity
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Portland, OR
EIN: 815080532
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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Amy Bowler
3 months ago
Steve Chappell
3 months ago
Elena Cothalis
4 months ago
6 months ago
Maxene Jessop
8 months ago
8 months ago
9 months ago
Travis Jessop
9 months ago
Kerri Smith
9 months ago
Hunter Schwager
9 months ago
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