The Long Drive Challenge at this year’s Golf Scramble raises $26,000 for seriously ill children who need rides to medical care in the Bay Area.

Emily Alexis shares her emotional story of long drives with her son in order to get him the best medical care possible at Hospice Giving Foundation’s Golf Scramble Fundraiser on September 9, 2019.

The Long Drive Challenge

I have been asked to speak to you today about a story I hold close to my heart…my story is not about a loved one’s passing but, it’s about the hope for life…it’s my journey of having a little boy with a lifelong chronic illness and how it has affected our family. It’s also a story that many people face daily. My husband and I were married in 2011 and were very excited when our baby boy Ryan was born in March 2013. It was an easy delivery, but things went downhill fast. Ryan was born with hereditary spherocytosis, a condition that affects his red blood cells causing anemia, yellowing of the eyes, jaundice and an enlarged spleen.

As a new mother, I had no idea what it would be like to live with and care for a chronically ill child. It has been emotionally and financially devastating. Less than twelve hours after his birth, Ryan was immediately transferred by my husband, mother and myself using our car to the NIC unit in Albuquerque an hour away from Santa Fe, New Mexico, where he received his first of many blood transfusions to save his life. Little did I know this was the first of many long drives to Hospitals and Emergency Rooms.

Since that first traumatic night Ryan has received more than 18 blood transfusion and been hospitalized more than 14 times. My mother and I moved from New Mexico to Carmel Valley so that Ryan could receive better health care at UCSF. My husband still lives in New Mexico working a job that provides us with great insurance. We work off of one income because I am Ryan’s primary caregiver, which is a full-time job. With the help of my mother and family we are very blessed, but the medical bills are overwhelming. Our most recent trip to CHOMP for Ryan’s last transfusion was over $40,000 dollars and our part was $3,000. That amount does not include gas, lodging or parking when we go to UCSF. Since moving to California two years ago, Ryan has been in crisis 5 times resulting in extensive hospital stays. Parking at UCSF is $32 a day. It adds up quickly! I remember getting released from the hospital after a week stay and pushing my son out in a wheelchair with our bags, discharge papers, stuffed animal he had collected in his long stay, and pulling up to pay for the parking and having to pay $252. I felt defeated, exhausted and hopeless.

Ryan’s condition is something that we will always have to deal with, and his medical bills are never ending, but today we celebrate Ryan’s health. I am the lucky one with a great, happy kid and a family that loves and supports me. Last week we had the privilege of using Partnership for Children as we were chauffeured to UCSF to schedule Ryan’s splenectomy. It was such a blessing to have the assistance and support of a driver.

I clearly recognize the ups and downs and accept them as part of our son’s health issues. Maybe some of you can relate to my story either with a child or an adult with whom you’ve had to make the long drive in order to get the best care possible. Whether this resonates personally or not I’m sure we can all agree that any help offered to a family with a chronically ill child is a gift that is given and received with love.

Thank you for listening to my story and a big thank you to the Hospice Giving Foundation for providing Partnership for Children, and other child serving organizations the funds to offer this kind of help and service.