Still Miles to Go

One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

Another thing that makes Eithene so special is her unique relationship of another of our favorite little kids, (almost)-7-year-old Mighty Matthew. I’ve written of both of these amazing youngsters on numerous occasions because they have brought such light to our lives. Matthew calls Eithene his “best friend” and “sister.” They have known each other for most of their young lives, seen each other through multiple medical crises and interventions, and love each other dearly.

Last Friday, Jessica wrote to us to let us know that Eithene was so very weary from fighting her latest series of infections and was being transitioned to Hospice Care on Sunday. Hospice is end-of-life care which is focused on comfort while curative care is no longer central and is usually discontinued. Therefore, on Sunday, Eithene’s antibiotics were discontinued, and over the next week, all medications not directly related to comfort will be stopped. Eithene, however, wanted to celebrate her 5th birthday. So on Monday afternoon, her friends and family gathered to wish her a very special birthday.

Eithene was absolutely beautiful and got to spend a wonderful time with her loved ones. And Little Brother Gabriel got to play with his best friend True. Keith and I spent most of our time in the background with Matthew and his family, allowing everyone to interact with a special little girl.

Happy Birthday, Princess Eithene!

While my heart aches, I realize it is not for Eithene. She is so very tired and in so much pain. She is ready for her next leg. My heart aches for all those who love this little girl. Her family. Her friends. And especially Matthew.

If you feel inclined, you can leave her family a note on their blog: From the Banks of Jordan.

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We recently learned that the mito world lost another little boy early this morning. Our hearts go out to Zach Moody’s family.