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
- Amy Bowler
- Steve Chappell
- Elena Cothalis
- Maxene Jessop
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