A cool breeze and spots of sunlight filtered through the trees, finding its way into the spacious screened-in porch.

This is where Allie Feinman is at her best. The seizures that she regularly suffers are less frequent. Sitting in her specially mounted swing, she can enjoy the backyard of her Center Grove home without being bothered by bugs or the heat.

Though the 4-year-old girl can barely see, she can make out colors and light. Being outdoors makes her happy, said Jenny Feinman, Allie’s mother.

“This is our peaceful place out here,” she said.

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Allie lives with an incredibly rare genetic disorder known only as CDKL5. The 4-year-old is nearly blind, cannot walk or talk. She is beset with seizures that disrupt her days and wake her in the middle of the night and make sleeping difficult.

Allie’s limitations have made it all-but-impossible to carry her up to her room on the second floor of her family’s home. The family is working to remodel the lower level to create a bedroom, a handicap-accessible bathroom and room for other equipment needed to ensure she has the best possible quality of life.

“We’re kind of just now stepping into the realm of what we need for her daily home life,” Jenny Feinman said. “We have a two-story house, and going up and down stairs with 40 pounds of weight that moves and kicks isn’t working anymore.”

To help with that goal, the Noah Kriese Foundation chose the Feinman family as its grant recipient this year. The hope is to raise $50,000 to help with the totality of the projects for Allie.

“This was certainly something that we thought Noah would support. He had a heart for special-needs kids, and this fit what we like to do through the foundation,” said Susan Kriese, president of the foundation and Noah Kriese’s mother.

The foundation was created in honor of Noah Kriese, a 12-year-old Center Grove student who died after falling into the Trummelbach Falls in Switzerland in 2009. Noah was an advocate of helping others during his life and was particularly supportive of friends and classmates with special needs.

The nonprofit organization was formed to help support compassionate projects and service in the community, Susan Kriese said.

“We formed this to keep Noah’s spirit alive and to do things that he would have been a part of, if he were still here. This is important for us to keep this going and do what we can,” she said. “There are so many needs out there.”

Allie’s story was one that caught the attention of the foundation.

Allie had her first seizure when she was just 6 weeks old. The convulsing and spasms lasted a full minute. Her family rushed her to the emergency room, where she had 11 more seizures while doctors tried to determine the cause.

With no answers, medical staff recommended sedating her to let her body rest.

During the next five months, Allie suffered repeated seizures every day. Some lasted up to 15 minutes, an eternity as her parents tried to comfort her and keep her calm.

“There were multiple trips to the (emergency room). Every time you go, they admit you, and each one was a three- to four-day trip at time. Then they couldn’t find anything, so they sent you home. That kept happening again and again,” said Steve Feinman, Allie’s father.

Searching for answers, the Feinman family went to medical facilities in Ohio and Colorado. Allie had countless tests on her blood while epilepsy specialists tried to narrow the potential causes of the condition.

“All the while, you have very intelligent people doing wonderful testing, but there’s no answers,” Jenny Feinman said.

Because Allie was so young, and not yet walking or talking, the only symptom was the seizures. Only with intensive genetic testing was a newly identified abnormality revealed.

CDKL5 was discovered just in the past 10 years, and fewer than 1,000 people worldwide have been diagnosed with it. A majority of those with the disorder are female, according to the International Foundation for CDKL5 Research.

The name is an abbreviation of the mutated gene that it disrupts, affecting the creation of a protein vital for brain development. Without that protein, children with the disorder suffer extreme uncontrollable seizures.

Most use a wheelchair or other device to help them move. They are completely dependent on caregivers, Jenny Feinman said.

Steve and Jenny Feinman now had a name for what was afflicting the daughter. But since the disorder has no cure and treatment options are limited, not much changed about her daily life.

Allie takes numerous combinations of medications to keep her seizures under control, although they work to varying degrees.

She goes to developmental preschool at Center Grove, where she loves the swings and adaptive tricycles of gym class. Since being diagnosed, she has attended thousands of hours of therapy to help with her physical motion, speech and vision.

Therapists have worked with her on kneeling and trying to get her to crawl, identify different light and make sounds on her hand so she can recognized the vibration of different speech.

The family was able to raise money for a service dog, Barnaby, which warns the family when Allie starts seizing.

But with all of Allie’s needs, the family has also come to the realization that their home won’t work.

Moving to another one-story home isn’t really an option. They had tried to find another place in the Center Grove area, but nothing was available that wouldn’t also need modifications for Allie’s wheelchair and other equipment.

Allie’s siblings, 11-year-old Nick and 9-year-old Hannah, attend Center Grove schools and are involved in community activities.

Plus, Allie is at her best physically and emotionally when she’s in familiar places; uprooting her to another place would be very upsetting to her, Jenny Feinman said.

“She is very used to her environments. When you step outside that box, you get a different kid,” she said.

Already, they have removed a wall in the living room area, opening up the floor plan so that they can put a safety bed in it. Changes to the downstairs bathroom, including adding a handicap tub and toilet, will also be necessary.

But making all of the needed changes is impossible without help.

The Feinmans first connected with the Noah Kriese Foundation through another home project they were working on.

They had applied to the Make-A-Wish Foundation for help creating their screened-in patio. Allie loved being outdoors, but the sun and insects weren’t good for her.

Their wish was granted, and Scott Vest, owner of Vest Custom Homes and Remodeling in Indianapolis, did the construction on the screen room. While he was doing that project, the family spoke to him about their other plans for the home.

Vest is married to Susan Kriese, so he shared the mission of the Noah Kriese Foundation.

To help raise money for the effort, the foundation will host Noah’s Night of Compassion on Oct. 29 at SS. Francis and Clare Catholic Church. The event will feature a dinner by Vito Provolone’s, as well as live music, games for kids, face painting and a beer garden.

For the Feinmans, having the support of the Kriese Foundation and others in the community have helped make their difficult situation much more tolerable.

“I always tell people it’s amazing how much good can come from so much bad. You have this horrible disorder with your child that you cannot fix, but the people that we’ve met through it have been like a whole new family for us,” Jenny Feinman said.

If you go

Noah’s Night of Compassion

When: 5 to 9 p.m. Oct. 29

Where: SS. Francis and Clare Catholic Church, 5901 Olive Branch Road, Greenwood

What: A fundraiser for the Noah Kriese Foundation, which donates money to area families with special needs children to complete specific projects. This year’s event will benefit Allie Feinman, a 4-year-old Center Grove area girl who has a rare genetic disorder CDKL5.

Tickets: $15 for adults, $5 for children

What’s included: Dinner by Vito Provolone’s, live music, a beer garden, auction, kids games and face painting and treat bags.

Information or to buy tickets: noahkriesefoundation.org/current-events

Author photo
Ryan Trares is a reporter for the Daily Journal. He can be reached at rtrares@dailyjournal.net or 317-736-2727.