Support for the Jasper Family
We are starting this fund in support of The Jasper Family, whose sweet 15-year old daughter and sister, Jamie, passed away on September 26, 2021, after a courageous two-year fight with an incredibly rare disease. The past two years have cost the Jaspers in every way—emotionally, mentally, socially, and financially as Carrie, Jim and Ruby have had to cut physical ties with the outside world due to COVID. Jobs, school, social gatherings, and hospital visits were all deemed too big a risk to Jamie’s fragile health. Not even hugs were allowed when the family needed them most.
Now is our time to wrap the Jasper Family up in the support we’ve wanted to show them all along, remind them of the good that’s left in the world, and give them one less thing to worry about as they grieve and heal from the trauma of the past two years. All funds will go towards a memorial in celebration of Jamie’s life, and any remaining funds will go directly to the family as they work to rebuild as a family of three.
ABOUT JAMIE’S ILLNESS
In June 2019, Jamie (then 13) was admitted to Lurie Children’s Hospital in Chicago with acute respiratory failure. But even after being in their care for nearly 40 days, the doctors had no official diagnosis for what was causing Jamie’s illness. Throughout 2019 and 2020, Jamie endured countless tests, treatments, and procedures (blood work, lumbar punctures, biopsies of her brain, skin, and lungs, many infusions, MRIs, angiograms, and more), spent the equivalent of 5 months in the hospital, and missed out on most of her 8th and 9th grade school years. Throughout this time period, Jamie’s lungs, skin, and brain became increasingly impacted by her illness. The competitive dancer could no longer dance. The straight-A student who loved books found reading difficult due to brain inflammation and seizures.
Finally, in April 2021, a team of specialists in three states and genetic testing determined a diagnosis for what had been wreaking havoc on Jamie's life: atypical Griscelli Syndrome. Jamie was only one of a handful of documented cases in the world. A stem cell transplant was Jamie's only hope for a cure. In June 2021, Jamie received a series of chemotherapy treatments to prepare her body for the stem cell transplant. The transplant occurred on July 8, 2021 and the following month seemed promising as her body adapted to the new cells. Tragically, she contracted several viruses while also developing graph-vs-host disease (a serious side effect that can happen in transplant patients) and then a secondary form of HLH (an auto-immune disease related to her Griscelli Syndrome). On September 26, 2021, after years of fearlessly fighting the disease and enduring treatment after treatment, our sweet Jamie passed away in the hospital with Jim and Carrie by her side.
Jamie will always be an inspiration to those who knew and loved her. We are all, always, on Team Jamie!
