ONCE UPON A GENE - EPISODE 107

The Joy Doesn't Need to be Ambiguous Even Though The Grief Is - Rare MERRF Syndrome Mom Jessica Fein

Jessica Fein is the mom to three children. Her middle child, 15 year old Dalia, has MERRF Syndrome, a rare form of mitochondrial disease. This degenerative disease has affected her being able to talk, walk or eat like she was able to do when she was younger.

EPISODE HIGHLIGHTS

Can you share a little bit about your children?

We adopted three children from Guatamala— Jojo, Dalia and Theo. Dalia's birth mother is the only mother we've met. The first time we met her was when we went to adopt Dalia. A couple years later when we went back to Guatamala to adopt Theo, Dalia's birth mother wanted to meet with us. In just two years, her health had declined, but they weren't sure why. Years later when Dalia was diagnosed with MERRF Syndrome, we learned the condition is maternally inherited and what had made her birth mother so sick in such a short period of time. 

What has Dalia's diagnostic journey been like?

At first, Dalia developed normally. At about two years old, her speech was delayed and her toddling was wobbly. I was reassured she was fine, I'd call for early intervention again and we repeated this cycle for a while. Finally a doctor agreed to do a hearing test, which showed mild to moderate hearing loss and Dalia had to get hearing aids. Since Dalia was adopted, we weren't sure of the root cause of her hearing loss, so we did genetic testing. With the blood work results, Dalia's disease was immediately identified as myoclonic epilepsy with ragged red fibers (MERRF).

When you imagined your family's future after adopting three children and then it changed so drastically with Dalia's diagnosis, what truths did you realize?

I re-imagined my dreams once when we weren't able to have biological children. I was able to embrace a new dream and realize that in many ways adopting would be more interesting and adventurous. The re-imagining still unfolds because things continue to change with a degenerative disease. There's a sadness that for a long time, I didn't give myself permission to feel. More recently I became familiar with the idea of ambiguous grief— when you're grieving someone who is still alive or you're grieving parts of a person who is no longer here. It was freeing for me to understand I was grieving what I thought her life was going to be and what our lives were going to be.

How has the experience of being Dalia's mom helped you find purpose?

I feel committed to sharing Dalia's story and our story. Doing that has given me a lot of perspective and purpose. Part of my purpose is talking about it, raising awareness, sharing what I've learned and helping those who aren't as far along in their diagnosis journey. Dalia is such an amazing person and I want people to know her story.

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