Hey Nomeites & friends - Erin needs our help!

This is Sue Steinacher, and I'm posting this for my dear friends, Erin and Patti Lillie - and especially Erin - who is coping with a rare and deeply debilitating condition called Dystonia. He and Patti have been reluctant to speak out about just how dire their situation is, but they've given me permission to advocate for them.

First off, I'm directing this request primarily at the good people of Nome, Alaska, where Patti and Erin lived for many years until circumstances required a move to Anchorage a few years ago. Erin contributed in so many ways to the Nome community as he searched for his true calling: as a reporter for the Nome Nugget, director of the Boys & Girls Club, a banker briefly, a tireless and upbeat Rotary member, and eventually as an attorney. But he knew very early on that he had found his life partner in Patti Oksoktaruk from the Native village of White Mountain, and they have steadfastly stood by each other in sickness and in health.

Erin's condition began over eight months ago, with symptoms somewhat like Parkingson's, making it impossible for him to continue working. His muscles have continual episodes of involuntary twitching and contracting, painfully compressing his spine and organs. As Dystonia is so rare, the many medical providers he visited didn't understand the cause of his symptoms, and continually dismissed his condition. At least now we believe we have a diagnosis. Erin has reached the point where he fears the compressions will stop his heart or lungs from functioning. He and Patti continue to search for specialists who can help ease this incurable condition, but Erin has also begun to prepare for the possibility of death.

Thankfully, Erin has some health insurance coverage through Patti's work, but there are still expensive past and upcoming co-pays and travel expenses, in addition to the loss of over eight months of income. They have depleted their savings, and are accruing mounting debt, as they wait in hopes of being accepted into and traveling to the Mayo Clinic, or another medical center familiar with treating Dystonia.

All donated funds will be deposited directly into the Lillie's account to assist them with keeping up with expenses and continuing their search for medical resources. They have a long road ahead of them.

Erin has asked that friends not call or visit, although he can manage texts. Patti and Erin have kept this so much to themselves, that even more than financial donations, I'm sure they could benefit from feeling the love friends, family and the wonderful community of Nome and the Bering Straits Region have for them. Quyaana!