NEVADA CITY, Calif. August 30, 2018 – Come join us, all are welcome! Doors open at 4 pm at the Miners Foundry in Nevada City, live entertainment by the amazing Beaucoup Chapeaux begins at 5 pm. The dinner will be served buffet style, including spaghetti with fresh garden roasted tomato sauce on your choice of noodles or zoodles, farmers market salad, bread and dessert.
Background:
In January of this year, 16-year-old Jonah Rivera-Stockdon got simple mononucleosis, which triggered a rare auto-immune response called HLH in which the blood turns on itself. Jonah nearly died, more than once, was in and out of the ICU down at UC Davis Medical Center in Sacramento, lost 30% of his body weight, and spent six months recovering his health.
Most of Jonah’s symptoms slowly disappeared, his weight came back, and he was able to shoot hoops and hang with friends at the river. His HLH was officially in remission. But his family, Angelina and Scott Young of Nevada City, still had to wait a month for one last genetic test to determine if he was out of the woods entirely.
Unfortunately, the test indicated the presence of the extremely rare genetic malformation, meaning Jonah’s body is primed for a repeat of HLH, or a case of lymphoma, or worse. His disease could be activated at any moment by a simple cold or flu.
It also means he needs a bone marrow transplant. In other words, Jonah’s immune system must be entirely wiped out, and then replaced with a new one from a donor. Fortunately, Jonah’s older brother Sol was a perfect match.
“It’s a blessing, ” said Jonah’s mother Angelina. “They will now share the same blood type, the same immune system; even the same allergies. Sol will live in Jonah, literally. They will be blood brothers in the truest sense of the word.”
Jonah is now in the bone marrow transplant unit at UC San Francisco’s Benioff Children’s Hospital, undergoing intense chemotherapy to destroy his current bone marrow. Because of this, he is immuno-compromised, and stuck in isolation in his room. He will lose his hair, feel nauseated for a long time, develop painful mouth sores and rashes.
After the transplant (very simple – surgeons inject the donated marrow into his body, and then let it find its way to the bone and begin to produce new blood cells), Jonah and his family will spend another 4-6 weeks in the hospital as his transplant either takes hold or he develops Graft versus Host disease. During much of this time, he will be living on platelet and whole blood transfusions, and still isolated.
“I encourage everyone to donate blood,” said Scott, Jonah’s step-father, who has had to resign from his teaching position at Bitney Prep High School in order to be in San Francisco during the week. “Donations are saving our son’s life. All blood donations are used to save lives.”
Even after Jonah’s discharge from the hospital, the family faces weeks of frequent visits to San Francisco before being transferred back to the Davis Medical Center, plus months of follow up visits. He will be tracked over his entire life to assure any side effects from the chemotherapy and transplant are discovered quickly. He will miss his entire Junior year at Nevada Union, and his mother has had to put her own college classes on hold as well.
Even with medical insurance, Jonah’s family faces mounting costs for deductibles, medicines, transportation, loss of income and other costs related to his condition.
“Thankfully our wonderful foodie friends have put together a Spaghetti Feed Fundraiser on September 16th at the Miner’s Foundry in Nevada City,” said Scott. “This community has been extraordinarily generous and supportive. We’d love to see everyone to thank them personally.”
Tickets for the fundraiser are available at Brew Bakers Coffee Shop on Main Street in Grass Valley, and online via Brown Paper Tickets.
WHO: Friends of Jonah present
WHAT: Community Spaghetti Feed Fundraiser :: Support Jonah and Family
WHEN: Sunday, September 16th, doors open at 4 PM
WHERE: Miner’s Foundry, Nevada City, Ca
TICKETS:
209 W Main St, Grass Valley, CA 95945
Facebook EVENT Link: https://www.facebook.com/events/223298555003893/permalink/226959177971164/