My son Jukie turns 22 today, and we hope you will help us celebrate!
We interrupt this Substack with a fundraiser for the Smith-Lemli-Opitz Foundation
Today we celebrate my son Jukie’s 22nd birthday!
(Please jump to the bottom of this plea to find the fundraiser links and the updated total. Thanks!)
A typical young man of 22 would be preparing to graduate from college, choosing a mate, or launching a career. By contrast, our 22 year old with profound autism and Smith-Lemli-Opitz syndrome is spending his time very much the way he did five, ten, or fifteen years ago: Taking long walks with his dad, staring with appreciative wonder at the trees that he loves to prune, asking to finish the meals of members of his family, and watching favorite animated films.
Since March of 2020, Jukie has not eaten inside a restaurant, stepped inside a museum, taken a trip on a train, bus, or airplane, or sat patiently during an indoor poetry reading or play. Jukie will wear a mask for a short period of time, as he did when getting his flu shot this week, but not long enough to enjoy these favorite activities of yesteryear.
As well as Jukie is doing these years – no COVID, no recent aggressive outbursts – we so wish that he were making real progress towards additional social or skills goals. We also wish there were better treatments and a cure for Smith-Lemli-Opitz syndrome and the host of other challenges that he faces, not least of which is his inability to communicate his needs with spoken language.
The poet Horace said that "Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant,” and such it is with Jukie, and with his family. Jukie will sometimes put on his shoes or hand me his coat, embracing the daily walks that now represent one of his only outlets or outings. With the constant companionship of his mom the chef and his dad the activities director and low-impact PE teacher, Jukie has lessened his intake of medications and improved his diet.
We also think of those families affected by Smith-Lemli-Opitz syndrome who don’t have Jukie’s domestic advantages, and all the affected families, like ours, that would benefit from additional treatments of this devastating malady. With that in mind, I hope you will help us raise money for a special endowment for the Smith-Lemli-Opitz Foundation.
I’m pleased to announce the creation of The Jukie Jones Duren Endowment for the Smith-Lemli-Opitz Foundation. We are not a wealthy family, but we hope that with your help, in the coming years we will fund an endowment of $25,000 that will eventually provide a steady and everlasting yearly source of support for the Foundation that helps families affected by Smith-Lemli-Opitz syndrome in a number of ways:
· Funding SLO research “seed” grants,
· Raising awareness of SLO to increase the rate of diagnosis,
· Revamping a recently-updated informational website (visit it to find pictures of Jukie and even his family),
· Welcoming new parents with an online parent support group (which Kate coordinates),
· Supporting grieving parents with a parent loss support group,
· Providing an equipment (such as feeding tube) exchange program,
· Distributing welcome packets for newly-diagnosed families,
· Subsidizing the biennial SLO family medical and scientific conferences,
· Connecting families to researchers and SLO specialists,
· And growing the research programs, such as a NIH natural history study that we participate in.
As I hope you can tell, for a small nonprofit organization, the Smith-Lemli-Opitz Foundation makes a huge impact.
All donations are tax deductible (Fed ID# 23-2635206), and all donations that mention the Jukie Endowment will help us take another step towards reaching that goal of $25,000. We have five years to fund it fully!
If Jukie cared about recognition, he would love that this endowment will bear his name. I think he would mostly care that so many other affected children and their families will benefit from your donation and the amazing work of this non-profit organization. What a hero he could be, with your support, if he could help families of people like him!
Please check out the website, donate via Facebook or via the website giving page: https://www.smithlemliopitz.org/ways-to-give/. Where applicable, please mention the Jukie Endowment so we can reach our goal before Jukie turns 25!
With love and appreciation,
Andy and Kate
P.S. Thanks for reading to the end. If you like, look for a picture of my family and me on the Smith-Lemli-Opitz Foundation website.
P.P.S. UPDATE: As of January 11th, readers like you have contributed $8,136 via Facebook alone. Thanks for your support! If you’d like to track our crawl towards $10K in 2023, please visit https://www.facebook.com/donate/711711380521284/10226850546197012/.