Spreading Joy: Announcing the Awarding of Six Connor James Smith Patient Assistance Grants Totaling Over $15,000

In many cases, insurance covers the bare minimum for patients with rare genetic disorders like SCN8A, which leaves families footing the bill for necessary medical equipment, therapy devices, educational aids, medications, outpatient therapy costs, home and vehicle modifications, etc.  The list is a mile long and the expenses add up quickly.
​
All of these out-of-pocket costs can create a financial burden that forces caregivers to make difficult choices about: choosing between life-saving medications or necessary medical equipment; choosing to sacrifice the physical health of their bodies because they cannot afford to remodel their bathroom to make it ADA accessible; choosing to pay for costly outpatient therapy instead of enjoying a family activity.

When I assumed the Executive Director position in July 2022, I had one particular idea that I desperately wanted to see come to fruition - a patient assistance grant for our SCN8A community. I know firsthand how many times caregivers are told no, so I wanted to create an avenue where we could say yes.

In early 2023, I received a phone call from a bereaved SCN8A mother, Krista Smith, in which she shared with me a vision she had to honor her late son’s legacy. The moment she began describing her ideas, I broke out in chills and tears streamed down my face because our visions aligned perfectly and I instantly knew this was meant to be.
​
Krista Smith, Connor’s mother, describes it best:

A promise made to a young boy at the end of his life started it all.

Connor, 12 years old, spent his whole life immunocompromised and suffering from seizures, and in December 2022, no longer could his lungs recoup from another illness. The doctors pulled life support and we, Connor’s mommy and daddy, made a promise to Connorman—our real-life superhero, and to God. For mercy, a painless passing into Heaven, that we would act out Connor’s legacy of spreading joy and being a blessing.

Despite Connor’s severe SCN8A diagnosis, he lived joyously. He lived a life well lived and loved. He smiled the brightest and he could make the most of a mundane day with just bubbles and fun color light-up toys. People were drawn to him with his cute and gentle demeanor. He traveled to and did so many fun things like watching his and Daddy’s beloved Chicago Cubs at Wrigley Field, flying through the Grand Canyon in a helicopter, and hiking the mostly uphill and then downhill Monticello-Saunders trail at the famed stomping grounds of Thomas Jefferson in his wheelchair.

His eyes squinted in delight, his right cheek dimpled, and his soul sparkled in pure happiness. He looked like an angel sleeping and always acted with love. He was an angel on earth.

Upon Connor’s passing on December 28, 2022, after his favorite holiday and when all the Christmas lights that lit up his hospital room dimmed and we walked out without our little boy, we started donating all his special needs and medical equipment for local families—putting words to action. The next month we reached out to Kacie at TCSF to fulfill the rest of the promise. 

We presented Kacie with our idea to use Connor’s rainy day funds and goodwill and pass it along to the SCN8A community to be a blessing and spread joy. We specifically wanted to help families just like us afford things they may otherwise sacrifice or go broke on—like seizure medications that insurance won’t cover, medical equipment deemed unnecessary by someone who doesn’t know our child, or special tools to help special kids access the world, like Connor’s favorite place—the beach. We dreamed of a grant in Connor’s name with few barriers and a global reach.

Kacie and TCSF collaborated alongside us with the same vision to lessen the burden on families in our community and furthered the mission by matching the grant. In just a few short weeks, we went from vision to beautifully developed graphics by Megan Varner for the grant application and an easy-to-read and apply application from Kacie, Krista, and Shelley. Danielle Hayward contributed donation links so that all of Connor’s friends and family could donate additional funds to the grant above and beyond the family’s commitment.

In just a few short months since Connor’s passing, the Connor James Smith Patient Assistance Grant has gracefully come together and it is already a blessing and spreading joy to the SCN8A community. We joyously look forward to keeping our promise to Connor.

I am thrilled to announce that TCSF’s Connor James Smith Patient Assistance Grant went live on April 5, 2023, and within 24 hours we had our first application! Since the grant’s establishment, we have awarded 6 grants totaling over $15,000! These grants were awarded to patients in the USA, Israel, and Australia. 

We’ve purchased a specialized toddler walker for a child desperately wanting to interact with his peers, an outdoor trampoline to help a child work on their physical therapy goals at home alongside his siblings, and a Wonderfold Wagon to help a child stay safe and be able to enjoy outings with her family. We also awarded funds to help cover out-of-pocket costs incurred for specialized therapy and high-priced medications, as well as covering a portion of burial costs for two of our SCN8A Angels who gained their wings this year. 

When establishing the grant program for families, we had one primary goal in mind: to make the process easy for everyone. We understand the mounds of paperwork and lengthy applications families are required to complete on an ongoing basis and we wanted to make the process as seamless and quick as possible for them, helping to relieve some of their financial stress. 

This grant is not based on financial need and is open to all SCN8A families around the world. Let us continue to honor Connor’s legacy of living life joyously by helping your family! 

Kac​ie Craig
Executive Director

LEARN MORE AND APPLY