Hope Hearts for Pompe Disease Support

For me, "real moments" happen when my path intercepts with another's journey of Hope.

Hope makes a way for them, all while they celebrate the very ones sharing in that journey. My role in making something beautiful to celebrate these real moments, well that's just Grace.

I would like to introduce you to Sherri, and her story of Hope.

Sherri McCloskey was among the very first patients in an experimental infusion therapy at Duke University Medical Center for Pompe Disease, an autosomal recessive disease (i.e., you have to inherit a gene from both mom and dad to have the disease). Sherri has traveled to Duke for treatments every other week for the last eight years.

“Pompe disease is a rare genetic disorder that disables heart and skeletal muscles and can lead to early death if untreated” (Science Daily, 2021). The treatments have been very successful for Sherri and they just received FDA approval as of August 6, 2021.

“The U.S. Food and Drug Administration approved Nexviazyme (avalglucosidase alfa-ngpt) for intravenous infusion to treat patients 1 year of age and older with late-onset Pompe disease” (FDA.gov, 2021).

This approval meant that she would no longer have to make the long two hour drive to Duke, but would now be able to receive the treatments locally.

As her final treatment date approached she wanted to present the medical team with a token of gratitude and appreciation for all they have been through together during this journey.

Sherri reached out to me to help her with these gifts. As we discussed the design elements that were most important to her, it was clear that the essential message of the gift must be “HOPE”. She requested that one of my signature Hope hearts be incorporated into each gift along with the Pompe ribbon awareness colors and that the gifts would be a useful item; so we decided on leather key fobs with blue leather Hope hearts. From there, she granted me artistic freedom to create a set of very meaningful gifts to be given out during her final treatment at Duke.

It was a pleasure designing for her and witnessing her optimism, enduring strength, and most of all Hope. I pray each unique design blesses the recipients as they have blessed her during the last eight years of treatment.