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Mother shares story of daughter's life with mitochondrial disease

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Caroline and her sister Elizabeth (Submitted photo)
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Massachusetts attorney Annette Hines' life was forever shaped by her first-born daughter, Elizabeth, who was born with a debilitating and degenerative disease.

Her daughter passed away in November 2013, and since then, Hines has worked as an attorney and advocate for families with children who have special needs and disabilities. She shares her story when she can to help others navigate their difficult world.

Many losses and a lot of grief

Elizabeth was born early, just 29 weeks into Hines' pregnancy. She weighed 2 lbs. and was in the newborn intensive care unit for nine weeks before she could go home.

"She was only 4 lbs. at the time, but she came home this tiny little doll. We struggled a lot the first year, and finally figured out after quite a few medical complications that there was a lot more going on there," Hines said.

At age 2 1/2, Elizabeth was diagnosed with mitochondrial disease.

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"The mitochondria is like the battery, the energy part of the cell. There are several functional areas there, and when it doesn’t work well, it impacts basically all the systems of the body. People do get diagnosed with mitochondrial disease as adults as well, but when children have it from birth, it’s pretty intense for them," Hines said.

Elizabeth was a wheelchair user due to profound brain damage and muscle weakness. She was blind and couldn't speak. She had respiratory issues, seizures and a tough time swallowing and eating.

"For us, it was just loss after loss after loss as the years went on — loss of abilities, loss of health and well-being. Many losses and a lot of grief," Hines said.

Where to start?

"Start gathering information. Gather it fully and give yourself space," Hines said. "It’s not just about the Google search. It’s about getting out there and meeting with other families. Your best information is going to come from other families that are living the life that you live. Everything’s not going to be the same for you as it is for your neighbor, other moms … but you learn from what they’re doing, and you get ideas for how to deal with things like daycare and the best therapists that are in your community."

The next step, she said, is to put together a team.

"That team is going to consist of professional people, but also family members and community members and just your natural supports that will really be there for you and for your children," Hines said.

Accessing services and supports can be confusing and difficult, she said.

"The systems are so complex and have so many rules that each thing that you need, whether it’s Medicaid or Social Security or some other program, they all have their own eligibility process and their own system of accountability. It’s a full-time job just trying to keep up with all of that," Hines said. "When you are not an attorney, like I was, it can absolutely overwhelm you and just roll over you, and some people give up."

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She said the biggest barrier is that there is no one door to go through to get an individualized plan of care for your disabled child.

"You have to put together this jigsaw puzzle that is individual to you and your family, and ... it’s not like someone hands you a box with that puzzle all ready to be made up … The whole game is stacked against you because you don’t even know where your puzzle pieces are. You have to go find those first, and then figure out how to put them together. It’s a tough, tough system," Hines said.

How do you juggle it all?

Though it may seem impossible sometimes, it's important to make time for yourself — something she learned later in life.

"I have learned as I’ve gotten older that it is important to go out to dinner with friends once in a while, and if you can’t get out, have them over for a glass of wine or to watch your favorite show," she said.

Sometimes you just have to let things fall through the cracks, Hines said, like laundry and other chores.

"As my kids were growing up, my mom would help and do some laundry for me or, because she couldn’t help me with my daughter Elizabeth, she might take (my younger daughter) Caroline for a little while. Maybe she would cook a meal or something. Those little things that allowed me to take a bubble bath or get out for a glass of wine with friends, they helped me carry on. You just can’t be 24/7. Nobody can survive that.," she said.

Helping your child with disabilities can be a full-time job, so Hines said it's important to be flexible.

"The best thing that I ever did for myself was to stop trying to work for other people. I created my own firm and my own business. I know not everybody can do that. I could never meet the demands of the traditional law practice out there. I just needed more flexibility," she said.

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Hines writes a lot about sibling relationships in families with disabilities. It was especially hard for her, she said because she was a single parent for most of her children's young lives.

"It was really hard to give everything to each that they needed, so there was a lot of sacrifice that my younger daughter made. I tried hard to make sure that she had things that were just her own," she said.

Hines said she worked hard to carve out time for Caroline.

"I actually home-schooled her for a few years and was able to get close to her that way during a period of time with Elizabeth was a bit more stable and we had some good care at home," she said. "My daughter Caroline danced pretty intensely from age 3 to age 13. I volunteered to do a lot of driving so that I got to spend time with her in the car, and some of our best conversations happened when I was driving her around."

An inspiration

It was Elizabeth who inspired her branch of law.

"I had just finished law school when I got married and got pregnant with her, so before I started practicing law, she came along and she totally sent me in this direction, for sure," Hines said. "... She was the love of my life ... We really bonded in those four years of being so intimately involved in her care ... She was funny and smart and strong and brave. She just had a light about her that attracted a lot of people to her. People were very willing and eager to enter into her circle, into her world."

Hines likes helping people in similar situations like hers.

"I make a lot less money, but I’m really a lot happier with the way that I practice. I have such joy and passion in what I do that it’s so fun to go to work every day, even when the days are hard because I know that I’m helping people," she said.

Caroline, Elizabeth's younger sister, is in college now. She's also shaping her career based on her experiences with Elizabeth.

"She, like so many of her disability siblings, is bent on going into some kind of helping profession," Hines said. "She’s very inspired by Elizabeth and by our family’s story, and that’s very common."

Related Topics: HEALTH
Kayla Henson is a former Dickinson Press reporter.
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