Help Lottie's Family Tackle Immense Medical Expenses

This year, I’ve witnessed the greatest grief I’ve ever seen up close – the grief of my sister and her husband watching their daughter disappear to an illness that makes no sense.

Lottie Joy was born with Down syndrome, and for the first 12 years of her life, Laura and Rick witnessed their vibrant daughter live life fully and abundantly. As she started sixth grade, she had close friends, loved to make treats and cards, and often reached for her parents with an affection that toppled out of her. Around this time last year, Lottie rapidly and inexplicably transformed in front of their eyes, eventually becoming fully catatonic. In a matter of weeks, they watched with grief and fear as the child they’d always known – the one who was alert and engaged, reading and playing, chatting and running – stopped walking, talking, feeding herself, or getting dressed for reasons they couldn't see and didn't understand. Soon she started to lose her ability to swallow. As her illness has progressed, her catatonic state has evolved into psychosis. She rarely recognizes her parents and is often distressed by people or situations that no one else can see. ​​

We now know Lottie is experiencing severe Down Syndrome Regression Disorder, a rare condition that is rooted in body and brain inflammation. DSRD is difficult to treat and under-researched. Many families find that the medical community simply does not have the will to pursue the long, grueling treatments that are available, and insurance companies rarely cover the steep expense of care. Patients like Lottie too often fall through the cracks.

Over the course of the year, Laura and Rick have exhausted their bodies, minds, and finances in trying to provide Lottie with the best care. In January, they will fly to LA to consult with the foremost expert on DSRD at the children's hospital. The hope is that over time, Lottie's immune system will have a chance to recover, the inflammation will relent, and she can experience ease and relief in her body again. But the road ahead is a long one.

Between the medical debt they’ve already accumulated and the minimum expenses they anticipate for next year, I’m hoping we can gather our resources together and raise $50,000 for them. Laura and Rick are prepared to go to the ends of the earth and back to care for their kid. I want them to know that they are not alone – that we all see, so clearly, Lottie is always worth fighting for.

Every donation allows them just a bit more ease and space to focus, not on towering medical debt, but on caring for Lottie. If you don’t have the means, sharing this page with your people helps, too. It’s one thing to go through a traumatic crisis on our own, but the experience shifts when we can feel our community rallied around us – thank you in advance for any support you’re able to offer. It means the world.