Her Daughter Will Never Be Able to Live Alone. So She Transformed Her Bedroom Door into Her Own Apartment Entryway (Exclusive)

A mother with a daughter who is facing lifelong medical challenges is finding ways to give her slices of life she might not otherwise experience.

Melissa Russell welcomed daughter Leah in 2006. As an infant and toddler, there were indications that Leah was different than other children.

"She would have these staring spells which I attributed to just being baby," Melissa tells PEOPLE exclusively. "Even older kids tend to do that. But later on, I learned those were actually seizures."

At age 3, Leah started going to school, where she was first offered therapy for a speech delay. Her initial diagnosis was ADHD, but as she came up to kindergarten, the family found therapy wasn't doing what they'd hoped for Leah.

After two years of kindergarten, Leah moved on with an IEP (individualized education program). She was speaking, but only in short sentences. Different professionals continued to try to help Leah advance developmentally and academically. Then, in 2014, Leah had her first seizure in school, a grand mal, or tonic clonic seizure.

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer​​, from celebrity news to compelling human interest stories.

Related: Mom Seeks Cure for 3-Year-Old Daughter's Rare Genetic Disorder: ‘I Want to Work as Hard as She Does’ (Exclusive)

"She was unresponsive for 30 minutes. We were transferred out from our local hospital. Initially, they believed it was juvenile epilepsy and that she'd grow out of it," Melissa shares.

The family was sent to Duke University for further testing, where a 100-gene epilepsy panel was performed.

"They found MSD-8 and other disease genes. They then wanted to do a more in-depth panel because she has Phenylketonuria (PKU)," she explained. Along with further testing, they tried lifestyle changes in hopes of preventing seizures to get Leah back on track.

"Insurance wouldn't allow us to continue treatment there, so we were transferred. There was more epilepsy testing, as well as EEGs, MRIs, and more," her mom shares. "They told me that Leah didn't have epilepsy because she doesn't have the brain function of an epileptic person."

Melissa continued to seek out answers for her daughter. In 2018, Leah's condition worsened.

"Leah started having myoclonic seizures every day, hundreds a day. A doctor at our local hospital put me in touch with a geneticist, who did a 1,000-gene genetic panel. There, they found that Leah has chromodomain helicase DNA-binding protein 2 (CHD2) myoclonic encephalopathy. At the time she was diagnosed, she was one of 44 people in the world with that diagnosis."

While Melissa was relieved to have an answer, she would come to learn that "absolutely no one knows about CHD2. No one knows how to treat it. There is no treatment, there are no studies, and there are no options."

Leah's diagnosis came in 2020, opening a new set of difficulties for the family. Despite the fact that Leah's seizures were daily and "would not stop," certain provisions such as oxygen weren't approved for her by insurance.

A single mom, Melissa had help only from her older daughter, Cameron, who graciously gave up a full scholarship to college to stay home and help her family out. One day the following year, Cameron was home with Leah when Melissa was overcome with a feeling that something was wrong.

"I called Cameron and asked, 'How is your sister? How's it going?' Cameron goes, 'She just went down for a nap, but I'll go check on her.' I wasn't a minute later that she called me screaming. Leah was unconscious and not breathing and completely blue. We called 911 and I left work to meet her at the hospital. Paramedics worked on her and did everything they could, and then we were shipped out to Roanoke where she was in the ICU."

For Melissa, the moment was completely heartbreaking. The mom admits, "I didn't know if Leah was going to wake up or how it would be once she did. The whole time we're going through this, I'm telling her, 'You fight. You fight and you come back to me. You fight.' I don't know if she heard or how to explain it, but when she did wake up, the first thing she said to me was, 'Hi, Mommy. I still fight.' It was the most beautiful sentence I've ever heard in my life. i just felt to my knees and squeezed her hand as she squeezed mine."

Laws in Virginia made it difficult for Melissa to be a caretaker for her daughter and provide for her family. She has since worked on campaigning stage legislators for practices that make it logistically easier on parent caretakers of minor children.

"Cameron has been my rock. She's sacrificed just as much as I have because of the love we have for Leah, though we don't see it as sacrifice," Melissa says. "We just give everything to her. But I wouldn't be able to do it all without this amazing young woman who happens to be my daughter. It's been the three of us taking care of each other like this for many years."

Melissa also continues to fight for answers for Leah. In 2021, Leah had a vagnus nerve stimulation (VNS) placed to help stop the seizures. Unfortunately, that was not the case.

"The seizures just kept coming. I think she had 7,000 in the first four months after it was placed. At that point we'd maxed out on all our medicines. Coalition to Cure, which is a CHD2-affiliated organization, helped me get in touch with one of the two doctors in the world that are making CHD2 a focus of study."

The Colorado-based doctor told Melissa that Leah has "one of the most severe cases of CHD2" as far as seizures go.

"Leah has the facial characteristics of CHD2. Some people with CHD2 are non-verbal and on the autism spectrum, but don't have seizures. Then there are others, like Leah, who by the grace of God is verbal, but has the worst side of medical stuff related to CHD2."

The doctor also informed Melissa that Leah would always remain at the mental stage she is today, which is that of a 5- to 7-year-old.

"It was a blessing and a curse because I finally got some answers. Unfortunately, because CHD2 is so new, there's no studies on the longevity of their lifespan. Leah is always one seizure away from complete brain damage or leaving us for good," Melissa says.

The troubling fact has helped the family embrace the beauty that lies in every day. From a special trip to Disney World to smaller local trips, Melissa finds it "beautiful and endearing" to see the world through her daughter's eyes.

"Every day she wakes up is a blessing. Every day she fights a seizure and comes through. There have been so many fights and doors closed on us, but I continue to be Leah's voice and try to provide a better life for her," Melissa says.

At 18, it's bittersweet for Melissa to provide the experiences she can for Leah while knowing what she's missing out on.

"We spend our days doing what Leah wants to do. Sometimes we'll paint or draw or go to Walmart or somewhere to pick up something new. We're limited to where we can go because Leah can be enjoying a special moment and go into a seizure at any time," she says. "I'm continuously monitoring her and what she can do because everything can be dangerous."

"But I do try to find nice things we can do, like going to the aquarium and the zoo. We try to do some exploring while making sure she doesn't get too overwhelmed or tired. She deserves to be happy and we deserve to make those memories that I couldn't make when I was a working parent."

"There's just a lot of things that Leah misses. Leah didn't get to go to prom," Melissa continues. "She didn't get to drive a car or have a first job. She never got to do all those milestones that are important for kids and that parents live for. My little girl's big milestone is going over a month without being in the hospital."

Continuing to help give Leah those little bits of an average life, she's replaced the traditional with "different milestones" that the family can celebrate with Leah. One of those was transforming her bedroom door into an apartment entryway, a project Melissa went viral for sharing on TikTok.

"Her door was just another bitty milestone we celebrated. She won't ever have those first set of keys to her new place handed to her, so this just gives her a little independence. She thinks it's this cute little door Mommy set up for her, but it just meant something to me to be able to say she lives in her little apartment 206," Melissa says.

"I shared it on TikTok because I was so proud of that door. I won't get to walk her down the aisle like I did her sister, but little things that I can do that put a smile on her face or give her a sense of self of independence, even if she doesn't understand it, that's truly important to me."

Encouraged by TikTokers, Melissa shared a quick tour of Leah's abode, which also includes a number of her nods to her favorite star of all time, Dolly Parton.

"Every year for her birthday, she chooses to go to either Dollywood or the beach," says Melissa, who admits it's a mystery to the family what first sparked Leah's love for the country singer.

"She loves music and of course, we're from the South, so everybody loves Dolly. But there's something about Dolly that enraptured and captured her heart and she loves her. I'm trying to work out getting her to Dollywood in the spring. She loves Dolly's story and her music. I think it's her spirit and her smile and all the positivity she represents," she continues

In many ways, the door honors that same spirit. Melissa was in disbelief at how many people supported the idea and even wanted to put together something similar for their own loved ones.

"It's been 35.2 million people who have seen this and really, it's not about the number. It's about all the unbelievable parents and caregiver, brothers, sisters who have someone in their home or their life that will never be able to have a place of their own and what that door meant to them. There are so many people who can't wait to do this for the people they care for. That right there was incredible to see, the inspiration it gave them and the excitement it sparked. It's the most beautiful thing."

The viral TikTok has also given Melissa a community of caregivers who understand the ups and downs of her experience.

"People who have someone going through something similar are like, 'Thank you for reminding me that it is a blessing, even when it's hard. It's still beautiful.' "

Leah continues to inspire her family and their hope is that in sharing her story, Leah's joy for life will inspire others and raise CHD2 awareness.

"I can't imagine what it's like to be in like Leah's body and her mind. And yet she still finds joy and she still smiles and she plays and it's just so beautiful," Melissa says. "And that strength right there, I mean, it will ground you and it will provide you with more strength than that you could ever have."

"I thought that I was Leah's life coach in how to proceed through this world, but really, she's mine," she adds. "She has taught me so many things and how to persevere. It's so incredible, but so very hard to encompass and envelop all the words that describes this girl and the joy that she has, even through the struggles and hardship that she endures daily. She does it every day, with grace and a smile in her heart. And I'm blessed enough to be her mom and share in this journey with her."

Read the original article on People