Beachwood residents, Drs. Jill and Josh Miller and their three children: Madeline, 16, Jack, 14, and Sydney, 12, are a lively and outgoing family who enjoy being together. “We’re a typical family,” says Jill. “But having a special needs child has put us on a journey we didn’t know we were going to take.” Maddie was born with FOXG1 syndrome, a rare genetic disorder (she is one of 300 documented cases in the world) that affects most aspects of brain development.

Children like Maddie have severe intellectual disabilities and can’t speak, see or hear well, have seizures, use a feeding tube and are unable to sit upright or walk. Jill recalls that as a baby, Maddie couldn’t lift her head up and people thought she was just tired. “We know there’s a little girl in there,” says Jill. “She lights up whenever she hears Josh’s voice. Everybody knows that she’s her daddy’s girl and refer to Josh as “Maddie’s Daddy.”

“Maddie is a special person,” says Josh. “She teaches her younger brother and sister unbelievable amounts of empathy and care that otherwise couldn’t be taught.” Jill knew about JFSA from her mother who worked for the agency for many years. “When Maddie was born, JFSA reached out and offered us any help we might need,” she says. As Maddie grew up, Jill and Josh shared night-time caregiving responsibilities and renovated their home to accommodate Maddie’s needs. “JFSA helped us place caregivers when we needed it. When it got to the point where we couldn’t continue to take care of her at home, JFSA was there to help us with the next step.” Josh recalls their reluctance at moving Maddie to a group home.

“It’s a step you don’t want to take. It’s one of those things that makes you really emotional. You feel like you’re putting your kid away,” he says. But when a friend reminded them that all children grow up and leave their home sooner or later, they were able to view their situation in a new light. “We had one caregiver for Maddie during the day while we attended to our medical practices,” says Jill. “Every night we’d give Maddie her meds and respond if her feeding machine went off or if she had a seizure. It was exhausting,” adds Josh.

Still, it was nine months before they were ready to make their decision. They were filled with uncertainty about where Maddie would be placed. “She could have been living on the west side or an hour away from us, making it harder to be with her,” says Josh. When an opening became available at JFSA’s Forever Children’s home in Pepper Pike, a specialized supported living site that cares for the severely disabled, including a one-to-one caregiver ratio, handicapped accessible equipment and highly trained staff for its four residents, the Millers were ready. “We always said that if we ever had to place Maddie, it would be at Forever Children,” says Jill. “Although it was gut-wrenching, it was one of the best decisions we made for her. My heart says I still want her at home, but she is in the right place getting incredible care. In fact, the caregiving staff are doing better than we did. She’s thriving there and that’s the most important thing.” Josh agrees.

“JFSA has made a beautiful home. It doesn’t feel institutionalized. It’s clean and open, there’s a skylight, a beautiful patio in the backyard with swings. We are extremely lucky to have Maddie at this home.” The Millers’ have great trust in JFSA staff that care for Maddie. “I know how hard it is to care for someone like Maddie,” says Jill. “If Maddie had a bathroom accident, I would apologize to her caregiver. But she would tell me not to apologize. Seeing someone taking the time to perform that kind of work for someone you love, there’s no way to properly thank them for how grateful you are.”

Forever Children has brought other benefits to the Millers as well. “We have a sense of peace and calm since she moved into the house,” says Josh. “Jill and I are able to spend more time with Maddie just as parents. We can simply enjoy our daughter and that’s what JFSA has allowed us to do. Most importantly, if something happened to Jill or me, we know Maddie will always be well taken care of.”

Jill is especially grateful for the family time she has regained with her younger children. “Because of JFSA, we can now do something as simple as taking Jack and Sydney out to dinner without worrying if Maddie’s caregiver could work a few extra hours, or if Maddie was well enough to go to dinner with them. We now have a future that has allowed us to be parents to all three of our children, rather than a caregiver to one,” she says.

The Millers are re-imagining their family’s future with a lot more hope. “JFSA has brought back a sense of normalcy to us and a sense of peace for the future,” says Josh. “There are no words that express how thankful we are. From our caregivers, to the house manager that makes sure that house runs seamlessly, to the program director and to the head of the agency, we really thank you.”