Why I Fundraise For The PCDH19 Alliance
I first met Julie Walters during a 10 day stay in the PICU in 2009, when a nurse told me that another one year old was having similar symptoms. It was Lila’s second cluster and Violet’s first, and my husband Ted and I connected with Julie and Matt to share our stories and fears. Soon after our encounter, Violet was diagnosed with PCDH19 epilepsy, followed by Lila a few years later. By the time we received Lila’s diagnosis, Julie had co-founded the PCDH19 Alliance and was running a non-profit and Facebook group on top of her day job, as well as parenting a special needs child needing frequent hospital stays. I am continually awestruck by her energy, capability and commitment.
I learned from Julie that the PCDH19 Alliance is entirely managed by volunteer parents, and that the rare nature of the condition makes it difficult to attract funding from major donors. I felt compelled to do something beyond writing a check, to help establish an organization that sustains so many families and connects them with doctors and researchers around the world.
In 2015, Julie and I organized a fundraiser in our home county of Marin in Northern California, inviting our neurologist, pharmaceutical sponsors, family and friends to raise money for PCDH19 research. At the time Lila was relatively stable on one anti-epilpetic drug (AED), having no seizure clusters but an occasional seizure with fever. So only a few friends really knew about her diagnosis, and it felt almost cathartic to share PCDH19 with a broader circle. Those who attended and donated now understood our challenges and showed up in support, which brought our family closer to many of them.
In the past few years, we have leaned on the support of that community and the PCDH19 Alliance many times, as Lila has been hospitalized over 15 times. She has had seizures while tumbling at gymnastics, playing volleyball at school, and swimming in a pool 800 miles from home. She has been air lifted a half dozen times, tried numerous AEDs and rescue meds, and endured hundreds of seizures.
In March 2018, our first hospital stay in nine years, Lila was intubated during a two week stay in the PICU. Desperate to end the cluster, I searched the PCDH19 Alliance Facebook group daily for new ideas. Julie had posted a Japanese study that showed good results with high doses of IV steroids, and our neurologist agreed to try it. Two days later we were heading home, and since then steroids have successfully ended all of Lila’s clusters, thanks to the Alliance Facebook group.
In June 2018, Ted and I attended the PCDH19 Alliance conference, and met neurologists and researchers from across the globe committed to improving outcomes for PCDH19 patients. That knowledge gave us great comfort when later that evening, Lila was again admitted to the hospital. All the conference attendees felt the devotion and desperation of the parents in that room, and one researcher said meeting our families had renewed his commitment and energy to work toward a cure.