The family of Johnathan Spencer, a 4-year-old with a terrible
disease, held a sale to raise money for the boy’s medication
($50,000 a year) and for a trip to Disneyland.
Last weekend, although I touted the Las Madres yard sale, I stopped briefly by another yard sale that meant a lot more. The family of Johnathan Spencer, a 4-year-old with a terrible disease, held a sale to raise money for the boy’s medication ($50,000 a year) and for a trip to Disneyland.
Johnathan suffers from Niemann-Pick Type C. As the website his family set up explains, it is “a genetic neurodegenerative disease that has no cure or approved treatment and is fatal. I am not sure a parent could get worse news.”
The disease is so rare that only 500 people in the world have it. At first, I typed “in the United States”… but no, it’s only 500 in the entire world. Johnathan’s family had been trying to figure out what it was since he was 10 days old. Only two labs in the U.S. run the test to diagnose it. His family got the world-shaking news March 9.
Johnathan is not able to properly metabolize cholesterol and other lipids, says the National Niemann-Pick Disease Foundation website. They build up in the liver, spleen and brain. As the site bleakly states, “NPC is always fatal.”
Most children die before age 20, and many before age 10.
With so few incidences of Niemann Pick Type C disease, there’s little incentive for researchers to delve into it. Johnathan’s now on a drug that is not FDA-approved.
The yard sale is over, but you can still help out with funds for Johnathan and his trip to Disney. Visit www.johnathanspencer.org and click on “How you can help.” Additionally, you can send Johnathan or his parents a card to encourage them, at P.O. Box 1790 in Gilroy.
As the NPC foundation website says, “Be determined, be stubborn, endure.”
JOIN THE GRANGE: An historic organization, the Grange invites people to join for free during the month of April. Gilroy’s Grange is at 8191 Swanston Lane, tucked in the corner between Leavesley Road and Monterey.
“The Grange is a grass roots organization that began in 1867, in the aftermath of the destructive and divisive Civil War (which makes me wish they showed black people on their website). Rising from the fields and farmlands, we gathered on common ground to heal and support each other, work together, and honor traditional values. We built halls across the rural landscape of America, inviting family, friends and neighbors to share the harvest from the fields and celebrate the bounty of life.” That according to californiagrange.org.
It all sounds pretty good, and it’s in vogue more than ever thanks to the growth of the slow-food movement. The Grange is convinced that once people experience a year of free membership, they’ll stay.
“Fifty years ago, The Patrons of Husbandry (commonly called The Grange) had over 40,000 members in the State of California. Today, that number has dwindled to about 10,000. However, with a renewed interest in ‘slow food,’ sustainable agriculture, family values and a sense of community, the Grange is seeing resurgence in membership,” reports the group’s press release.
With husbandry and hemp, you can’t go wrong (May 22, the Grange in Sacramento hosts an Industrial Hemp Festival). Two American presidents grew hemp! Perhaps relatedly, the Grange also hosts Grangestock, a “spoof of Woodstock and the hippie generation,” on July 17 in Orangevale.
YESTERYEAR LUXURY: The once a year access at Gilroy Hot Springs is coming up May 1. See where the rich of the late 1800s vacationed and soaked in the healing waters, and later, where Japanese-Americans released from WWII interment centers went to pause, shake their heads and take a breath. I saw a poster for the event and only noted the website to check for details – but when I visited www.friendsofgilroyhotsprings.org on Tuesday, there was no mention of the event. Get on board, people. I do remember that there was a charge for the event.
An unrelated site, www.meetup.com, relays the information that things run from 8 a.m. to 4 p.m., and involve displays, docent-led tours, and live Tarantula Jug Band music, with 1860-1960s period costumes encouraged. Thanks to a fun linebreak on the site, I thought there was a live tarantula jug and pictured thrusting my hand in. Oh well!
The pictures of the hot springs in their heyday in Claudia Salewske’s book Gilroy made me eager to visit this National Historic Register site. Maybe I’ll see you there.
Erika Mailman is a historical novelist and teaches writing online through mediabistro.com. You can reach her through www.erikamailman.com.
