Many Shoulders for Terri, Connor and Brigid

Anyone who has spent time with Brigid—or has even seen a photo of her—knows what a supremely loved and cherished person she is. Her parents, Terri and Connor, have a huge community built on love, mutual aid and care, generosity and showing up for one another, and we were all thrilled when Brigid joined the family five years ago.

Just after Brigid turned three her development, which had been normal up to that point, began to regress. While she is still bright, creative, and incredibly caring, for the last two years an unknown neurodegenerative disorder has steadily degraded her balance, motor control, and speech. She has bravely put up with all manner of scans,

tests, blood draws, swallow training, physical therapy sessions, wearing leg braces, and three trips to the emergency room for stitches after sudden falls.

In mid-June Brigid was hospitalized with seizures. Her case was escalated to Seattle Children’s Hospital (SCH), where they reviewed previous test results and caught something that had been missed—Brigid’s MRI from last year showed ongoing atrophy of her caudate nucleus and cerebellum. There are not many neurological disorders with those particular hallmarks. The doctors at SCH currently believe that the likely cause is childhood-onset Huntington’s Disease, a progressive and fatal condition which is so rare that there are only 3-5 cases annually in the entire United States. Genetic tests are currently underway to find out.

If childhood-onset Huntington’s is the culprit, then Brigid and Terri and Connor are facing the most serious form of the disease which exists, and Brigid will have only a few years to live. If the tests show that it is not Huntington’s, then what the doctors at SCH call “a diagnostic odyssey” will begin in search of the real answer. Unfortunately, only a handful of progressive neurological disorders offer any hope of treatment beyond palliative care.

How do we begin to wrap our minds around this reality? How do we help Terri and Connor focus all their love and attention on Brigid and each other? How do we provide for their necessities AND their dreams while they navigate what no one should have to?

Terri has shared that they need special seizure monitoring equipment and adaptive tools to help Brigid handle basic tasks. The family also urgently needs a reliable second car so one parent can get to and from work while the other handles daily transportation for Brigid. Gas prices being what they are, regular travel to therapists and Seattle Children’s Hospital adds up very quickly. Parking fees, meals on the road, and car maintenance are all hidden costs of out-of-town medical care. Let’s take that off their plates if we can.

It’s not news to anyone that healthcare costs in the US are outrageous, even when subsidized. Copays, deductibles, over the counter stuff, and

comfort items are extras that Terri and Connor shouldn’t have to worry about affording. Let’s help out with those. Let’s also be sure they have enough for whatever treatments come up that aren’t covered.

Brigid deserves to have all the fun and joy she can squeeze out of this life. Let’s provide for experiences for her and her family with all the bells and whistles.

Let’s make sure they have all the cash they need for nights when cooking is too daunting, for grief counseling, for last minute getaways, for the

toys that light up Brigid’s face, for the unforeseen costs and the foreseen ones, too. Terri has spent her life offering support, education, and community care. Let’s return it a hundredfold.