LAKE COUNTY, Calif. – A local child whose fight against a rare disease touched the hearts of community members has died.
Ryland Robert Joseph died May 16 at the age of 7 months after contracting an infection following bone marrow transplant surgery.
Ryland will be remembered at a service that will take place beginning at 1 p.m. Saturday, June 1, at Jones and Lewis Clear Lake Memorial Chapel, 16140 Main St. in Lower Lake.
A graveside service that will be open to the public will follow at the Middletown Cemetery. A reception will follow the graveside service in Hidden Valley Lake.
The tiny little boy, with huge eyes and an engaging smile, had captivated the many people who followed his story.
It wasn’t any regular story. It was one complicated by a rare illness – Wiskott-Aldrich Syndrome – and the effort to find a cure so that Ryland could live a long life.
But, ultimately, it wouldn’t be Wiskott-Aldrich Syndrome that took the little boy’s life, but an infection that attacked his organs, shutting them down in just a matter of days.
Ryland’s parents, Rodd and Kellie Joseph, had been given their son's diagnosis in February. That, for the young family, was devastating enough.
Without a bone marrow transplant, Ryland had five, maybe as many as eight years, before the disease weakened his body enough that another, more severe condition – like leukemia or another autoimmune disease – could take his life.
Wiskott-Aldrich Syndrome also made him prone to excessive bleeding, meaning that without a cure, the rough-and-tumble world of childhood – complete with tree forts, roughhousing and playing sports – was, potentially, life-threatening.
Ryland entered the fight against Wiskott-Aldrich Syndrome as the underdog, but he soon had a huge rooting section of people across the community and elsewhere – thanks in part to his parents' large circle of friends in their law enforcement profession – who had faith that a cure was possible.
His parents joined Facebook and posted daily – sometimes multiple times every day – documenting their battle to save their young son’s life.
The Joseph family also saw in their son's illness an opportunity to educate the community about his rare disease, which afflicts thousands of young boys across the United States.
In addition to raising the profile of Wiskott-Aldrich Syndrome, the family also raised awareness about the importance of bone marrow donations, as a bone marrow donation was Ryland's only hope for a cure. A bone marrow drive was held in Ryland's honor in April in Clearlake.
At first, the hard part seemed to be in getting a bone marrow donor. Yet, it was soon discovered that his older sister, Brooklynn, was a match, a circumstance that a representative from the bone marrow registry Be the Match had told Lake County News was rare among siblings.
Ryland was admitted to the University of California San Francisco Medical Center University of California San Francisco Benioff Children's Hospital in late April, where medical staff began the process of preparing him for the bone marrow transplant surgery.
On May 1, Brooklynn underwent surgery to donate bone marrow to her brother. The surgery went well and Ryland had the new bone marrow he needed.
Over the next two weeks, Ryland's parents reported that he was doing well. He was eating better than he had in some time and they were told that the engraftment surgery appeared to be a success.
At the beginning of the second week of May, however, problems began to surface.
Ryland began to struggle with high fevers and oxygen saturation levels in his lungs. He had contracted an infection because his immune system was weakened from the chemotherapy treatments necessary for bone marrow surgery.
As his parents watched helplessly, Ryland's condition began to rapidly deteriorate. Friends and family organized prayer vigils and sent messages of encouragement to the family privately and through Facebook.
On May 16, the little boy went into full organ failure.
“We are saying our goodbyes,” the family said in a message to friends on Facebook.
Ryland's grieving family has invited the community to take part in his services this coming weekend. They've expressed their gratitude for the support they've received from the many people around the Lake County community and even farther afield.
To help his family with medical and funeral costs a benefit account has been set up at Mendo Lake Credit Union; the account is called the Ryland Robert Joseph Be The Match Fund. Donations can be made to any MLCU Branch.
There also are raffle tickets for a 10 day African Safari for $20 each. Ryland's sister will be drawing a winner July 2. To purchase tickets please contact Jocelyn Cook at 707-349-7394.
Ryland leaves behind his parents, Rodd and Kellie; sister, Brooklynn; grandparents, aunts and uncles; and many friends, some of which he never knew but who rooted for him and his family and who mourn his death.
Rodd Joseph said he plans to write about his son, as he wants to share Ryland's story and make sure he's never forgotten.
For those whose hearts were touched by the brave little boy and his loving parents and sister, it's a story they're not likely to forget.
Email Elizabeth Larson at This email address is being protected from spambots. You need JavaScript enabled to view it. . Follow her on Twitter, @ERLarson, or Lake County News, @LakeCoNews.
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