Mom shares story of raising a daughter with rare disease

KENTWOOD, Mich. (WXMI) -- For many, going to college and starting a new job is all a part of growing up and becoming an independent adult. For Julie Ennis and her daughter Morgan, that's not how things are shaping up.

Their story is one of a mom who raised three children while dealing with the challenges that one of them, Morgan, faced from her one-in-a-million medical diagnosis.

Their story begins when Morgan was born four weeks early. After she was born, doctors noticed Morgan had a cleft palate, a deleted chromosome, and was missing the middle channel of her brain, a combination doctors say is extremely rare.

"I've always tried to look at the positives in life," Julie said while looking at Morgan. "[Her] smile just makes it all be better."

Morgan wasn't growing normally and was getting sick a lot. Since 18 months old, Morgan's only been able to get nourishment through a feeding tube. She developed more medical issues: countless infections, a blood disorder, and regular seizures. At one point, she was seeing at least 10 different doctors a week.

To care for her, Morgan's parents decided one of them would stay home with her.

"I quit a law firm to stay home," Julie said. "It was either her dad or me, and we decided it was going to be me."

Julie stayed at home while her husband went to work. At the time, the family received $222 a month in a family support subsidy.

"It was 50/50 when he was home. I did not think I could do this on my own. I've been on my own for three years."

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A Michigan mother is sharing her family’s story after their daughter was diagnosed with an extremely rare condition.
A Michigan mother is sharing her family’s story after their daughter was diagnosed with an extremely rare condition.
A Michigan mother is sharing her family’s story after their daughter was diagnosed with an extremely rare condition.
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Then three years ago, Julie's husband took his own life.

"It's just like he couldn't fix her, that maybe is one of the issues," Julie said. "He just put a lot of pressure on himself to keep the family going."

After her dad's death, Morgan received retirement benefits, survivor's benefits, and disability. She also qualified for Medicaid.

But four months later, Morgan turned 18, legally becoming an adult, which created a new set of problems. Being considered an adult meant that caseworkers could no longer talk to her mother, and that forced Julie her to apply to become Morgan's legal guardian; a process that took months.

Pediatricians also said they weren't supposed to care for Morgan anymore once she reached adulthood, but they said they'd keep her as a patient anyway because they didn't think Morgan would live for as long as she has, Julie says.

Ultimately, Julie is hoping to qualify for a private nursing home for Morgan. Until then, she's Morgan's primary caretaker, working around the clock. Julie says every day is a struggle, but she loves her little girl and wants the best for her.

"I just know this is my life right now, and it won't always be like this. And when she does pass, it'll be a huge hole for me and probably my kids for a little bit. I'm just hanging in there."

Julie's advice to any parent facing similar challenges is to write down everything in every doctor's visit and stay on top of important dates. That way you're prepared when it becomes time to transition to adult doctors.

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