Jake

In loving memory of Jake R. Whenham
January 13, 2006 - November 8, 2021‍

Our son Jake died at the age of 15. He was an only child in Southern Manitoba, Canada, and had a large extended family, who he loved to spend time with. When Jake was 6-9 months old we noticed he was not meeting some of his milestones. At 18 months, when he was still not walking or pulling himself up to stand, we started seeing doctors and specialists. His brain MRI showed demyelination. After a urine test, a tissue biopsy and genetic testing, Jake was diagnosed with free sialic acid storage disease (also known as Salla disease). We searched the internet and found very little information.  The STAR foundation did not exist at that time.

Initially, our journey felt lonely, and we grieved the loss of things Jake would not do. Once we gave ourselves permission to grieve the loss of the life we imagined , we started seeing the joy in life again. Our eyes were opened to how amazing and capable our boy was, and the amazing opportunities and experiences he had access to. He loved to meet new people and shake their hands. His happiest moments were when he was swimming, wrestling with his dad, hanging out among peers his own age, and spending time with family. He was serious at times, and was a deep thinker, even if he could not express all that he was thinking. He recognized when others were scared, sad or feeling lost and, he reached out to them with a gentle hand. He got embarrassed when his mother kissed him in public and got frustrated when his parents didn’t listen or just “didn’t get it”. 

He loved all kinds of books, including Chapter books and audiobooks. He loved watching Hannah Montana, the Franklin cartoon, Family Feud, Good Luck Charlie, and Full House. He did therapeutic horseback riding, Challenger baseball, cooking club, music therapy, summer day camp, skating in a special sled, Saturday night for teens, camping, swimming, church activities, trips to zoos and museums, a trip to BC, and a Disney cruise. A highlight was when he got to dress up in a suit and attend a fancy reception at the Governor General’s home, as well as going to weddings.

Jake made great strides, despite his challenges. He learned to walk with a walker at 4 years of age. He learned some sign language, a few verbal words and was starting to learn to use an eye gaze device to communicate. His educational assistants helped him prepare presentations to share with his classmates.

Jake was probably sad sometimes that his body did not do what he wanted it to do and sad that he could not fully express his needs and wants. Yet, he was a fighter, and never let it get him down for long.

The sad reality is that Salla disease is progressive. We were in denial about the progressive aspect of the disease for a long time. At 12 years of age, Jake started losing his ability to walk, started falling a lot, and eventually ended up needing to be in a wheelchair full-time. He started losing his verbal words and ability to sign. In his last year of life, he stopped being able to hold his drinking cup and could no longer chew or swallow and needed a feeding tube. In his final weeks, his body started rejecting food and he developed aspiration pneumonia as well as a movement disorder.

Even though a cure or treatment was not found within Jake’s lifetime, we have hope for future generations. Although we mourn his death every day and always will, we are grateful to be able to share his story and our memories.

Aleasha and Jason Whenham
(Jake’s mom and dad)

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