Give so they can live

Raised: $150,366.00 $2,000,000.00

Ten years ago, Lester and Noreen welcomed a beautiful baby boy Daron into this world. He brought with him so much love and fun. Yet all was not right with Daron. He could not walk or talk well, and soon started to lose his balance and fall. When Daron turned 5, Lester and Noreen welcomed into their family two beautiful twin girls named Angela and Aubrey. Daron was proud to be a big brother!

Yet Daron's health continued to decline. He fell so many times that it was common to see him with a bandage on his chin where he had gotten stitches. To everyones alarm the twin girls started showing some of the same signs of disability that Daron had. Lester and Noreen started having genetic testing done on all three children.

They were becoming desperate for answers, yet every month that passed the three children were getting worse. Daron started having seizures, could not talk, and was starting to have difficulty even eating.

The children were finally diagnosed with a very rare and especially cruel disease called “PKAN”(Pantothenate Kinase-Associated Neurodegeneration) an extremely rare genic neurologic disease that affects mostly children. PKAN causes a part of the brain to degenerate, which results in severe problems with walking, coordination, vision, speech and swallowing. Uncontrollable twisting movements can be extreme, causing pain and even bone fractures. Awareness is not affected at all, making the suffering imposed by the disease especially poignant. The disease is fatal, with many children dying before the age of 10. Daron, Angela, and Aubrey were all diagnosed positive.

Although things seemed insurmountably hopeless, Noreen started researching all things PKAN. She came across The Spoonbill Foundation, founded by a group of doctors in Portland Oregon that have dedicated 25 years to researching this disorder.

Then came the incredible message of HOPE. The Spoonbill team had discovered a potentially miraculous new treatment: CoA-Z. When administered to both laboratory animals and human tissue with the PKAN genetic defect, the degeneration in brain tissue not only was stopped, but completely erased diseased PKAN biomarkers.

Now The Spoonbill Foundation has received FDA approval to do a large-scale clinical trial to administer this potentially life-saving treatment to all 200+ patients in the US with PKAN. In order for the medication to be administered to all these children The Spoonbill Foundation needs to raise $2 million. We are racing the clock to help them raise this save these desperately sick children. Won’t you please help?