A mother with a kid who has permanent physical issues is finding methods to offer her a piece of life she would not otherwise have.
Melissa Russell received her daughter, Leah, in 2006. As a newborn and toddler, there were signs that Leah was unlike other children.
“She would have these staring spells, which I attributed to just being a baby,” Melissa tells PEOPLE exclusively. “Even older children tend to do it. But later, I discovered they were genuine seizures.”
When Leah was three years old, she started attending school and received therapy for her speech impairment. Her first diagnosis was ADHD, but as she approached kindergarten, the family discovered that therapy was not providing the results they desired for Leah.
@lissa.jade1 #fyp #coalitionforacure #chd2myoclonicencephalopathy #chd2 #chd2awareness #coloradochildrenshospital #epilepsy ♬ In Jesus Name (God Of Possible) – Katy Nichole
After two years of kindergarten, Leah received an IEP. She spoke in brief phrases. Various professionals continued to try to assist Leah in her growth and academic progress. Then, in 2014, Leah experienced her first grand mal, or tonic-clonic seizure, at school.
“She remained unresponsive for 30 minutes. Our local hospital transported us out. Melissa explains, “They thought it was juvenile epilepsy and that she’d grow out of it.”
The family was directed to Duke University for further testing, where a 100-gene epilepsy panel was run.
“They identified MSD-8 and other illness genes. “They wanted to do a more in-depth panel because she has phenylketonuria (PKU),” she said. Along with more testing, they attempted lifestyle adjustments in the aim of preventing seizures and getting Leah back on track.
We relocated because our insurance wouldn’t allow us to continue our treatment there. There was more epilepsy testing, as well as EEGs, MRIs, and so on,” her mother explains. “They told me that Leah didn’t have epilepsy because she doesn’t have the brain function of an epileptic person.”
@lissa.jade1 #fyp #warrior #epilepsy #CHD2 #DBS #daughter #babygirl #findacure ♬ Make It Through – Leanna Crawford
Melissa continued to search for solutions for her daughter. In 2018, Leah’s health worsened.
“Leah began suffering myoclonic seizures every day, hundreds every day. A doctor at our local hospital connected me with a geneticist, who conducted a 1,000-gene genetic panel. There, they discovered that Leah had chromodomain helicase DNA-binding protein 2 (CHD2) myoclonic encephalopathy. At the time of her diagnosis, she was one of 44 persons worldwide with that condition.
Melissa was relieved to have an explanation, but she soon discovered that “absolutely no one knows about CHD2.” Nobody understands how to cure it. There is no cure, no research, and no alternatives.”
Leah’s diagnosis arrived in 2020, posing a new set of challenges for the family. Although Leah’s seizures were daily and “would not stop,” insurance did not cover certain of her needs, such as oxygen.
Melissa, a single mother, relied only on her elder daughter, Cameron, who generously gave up a full college scholarship to stay at home and aid her family. Cameron was at home with Leah the next year when Melissa had a sudden realization that something was amiss.
“I contacted Cameron and said, ‘How’s your sister? How is it going? Cameron says, “She just went down for a nap, but I’ll go check on her.” It was just a minute later that she called me, screaming. Leah was unconscious, not breathing, and absolutely blue. We phoned 911, and I left work to meet her at the hospital. After paramedics performed their best efforts on her, they transported us to Roanoke, where she was in the ICU.
Melissa found the event incredibly upsetting. The mother says, “I wasn’t sure if Leah was going to wake up or what would happen when she did. Throughout this process, I keep encouraging her, “You fight.” You fight and then come back to me. You fight. I’m not sure whether she heard or how to describe it, but when she woke up, the first thing she said to me was, “Hello, Mommy.” I still fight. It was the most beautiful statement I had ever heard in my life. I instantly dropped to my knees and clasped her hand while she clutched mine.”
Virginia’s laws made it impossible for Melissa to care for her kid while still providing for her family. She has subsequently campaigned to lobby legislators for policies that make life simpler for parent caregivers of small children.
“Cameron’s been my rock. Melissa adds, “She’s sacrificed just as much as I have because of our love for Leah, even though we don’t consider it sacrifice.” “We just give her everything.” But I couldn’t do it without this incredible young woman who happens to be my daughter. For many years, the three of us have looked after each other in this way.
Melissa is still fighting for answers for Leah. In 2021, Leah had vagus nerve stimulation (VNS) to make her seizures cease. Unfortunately, this was not the case.
@lissa.jade1 #fyp ♬ original sound – jacquelinethoma
“The convulsions kept coming. She reportedly experienced 7,000 convulsions in the first four months after the implantation. We had used up all of our medications at that time. Coalition to Cure, a CHD2-affiliated group, assisted me in contacting one of only two physicians in the world who are focusing on CHD2 research.”
The Colorado-based specialist informed Melissa that Leah has “one of the most severe cases of CHD2” in terms of seizures.
“Leah displays the facial traits of CHD 2. Some persons with CHD2 are nonverbal and on the autistic spectrum, yet they do not experience seizures. However, some individuals, such as Leah, manage to speak despite experiencing severe medical complications related to CHD2.
The doctor also advised Melissa that Leah will always be in the mental state of a 5- to 7-year-old.
“It was a godsend and a curse because I finally had some answers. Unfortunately, because CHD2 is so new, there has been no research on how long they live. Melissa believes Leah is always one seizure away from causing permanent brain damage or leaving us forever.
The unpleasant reality has helped the family appreciate the beauty that exists every day. Melissa finds it “beautiful and endearing” to view the world through her daughter’s eyes, whether on a big vacation to Disney World or on smaller local adventures.
“Every day she gets up is a blessing. Every day, she fights a seizure and survives. There have been several fights and doors closed on us, but I continue to be Leah’s voice and strive to offer a better life for her,” Melissa adds.
Melissa, aged 18, finds it hard to offer Leah the experiences she can while also knowing what she is missing out on.
“We spend our days doing whatever Leah wants to do. We’ll occasionally paint or draw, or we’ll go to Walmart or another store to get something new. Leah’s potential to have a seizure at any moment limits our travel options, she explains. “I’m continuously monitoring her and what she can do because everything can be dangerous.”
“But I do try to find enjoyable activities for us to do, like visiting the aquarium and zoo. We attempt to do some sightseeing while keeping her from feeling overwhelmed or fatigued. She deserves to be happy, and we deserve to create memories that I couldn’t make as a working parent.”
“There are just so many things that Leah misses. Melissa says, “Leah did not get to go to prom.” “She didn’t get to drive a car or work her first job. She never got to experience all of the milestones that children and parents look forward to. Going more than a month without hospitalization is a huge milestone for my young girl.
To continue to provide Leah with the tiny elements of a typical existence, she has substituted the customary with “different milestones” that the family may celebrate with her. One of those was changing her bedroom door into an apartment doorway, which Melissa popularized on TikTok.
@lissa.jade1 #fyppppppppppppppppppppppp #fypage #fypシ゚viral #fyp ♬ Counting My Blessings by Seph Schlueter – Seph Schlueter
“Her door was simply another small milestone that we celebrated. She will never get that first set of keys to her new apartment delivered to her; thus, this just provides her some independence. She thinks it’s this lovely little door Mommy put up for her, but it meant a lot to me to be able to say she lives in her own apartment, 206,” Melissa adds.
“I posted it on TikTok because I was quite proud of that door. I won’t get to walk her down the aisle as I did her sister, but the small things I can do to put a smile on her face or give her a feeling of self-sufficiency, even if she doesn’t comprehend it, are genuinely important to me.
Encouraged by TikTok users, Melissa gave a brief tour of Leah’s home, which also included a few tributes to her favorite celebrity of all time, Dolly Parton.
“Every year for her birthday, she chooses to go to either Dollywood or the beach,” adds Melissa, who confesses the family doesn’t know what triggered Leah’s affection for the country artist.
“She likes music, and since we’re from the South, everyone adores Dolly. But there’s something about Dolly that captivates and captures her heart, and she adores her. I’m working on taking her to Dollywood in the spring. She adores Dolly’s narrative and her music. “I think it’s her spirit, her smile, and all the positivity she represents,” she says.
In many ways, the door embodies the same spirit. Melissa was astounded by how many people liked the concept and wanted to create something similar for their own loved ones.
@lissa.jade1 #fyppppppppppppppppppppppp #fypage #fypシ゚viral #fyp #happybirthday @Leah ♬ you are my sunshine – christina perri
“35.2 million people have viewed this, and it’s not about the numbers. It’s about all of the incredible parents and caregivers—brothers and sisters who have someone in their house or life who will never be able to live on their own—and what that door means to them. There are so many folks who can’t wait to do something for their loved ones. “That was fantastic to watch—the motivation it provided and the enthusiasm it created.”It is the most beautiful thing.”
Melissa has also found a network of caregivers who understand her ups and downs because of the ubiquitous TikTok app.
“People who have someone going through something similar say, ‘Thank you for reminding me that life is a blessing, even when it’s difficult. “It is still beautiful.”
@lissa.jade1 Replying to @_kassandrah_ Please meet the girl behind the door! Thank you all for the overwhelming support and love for my daughter’s door! We’re working on getting a P.O. Box set up for her to be able to receive mail from all who wish to send! As for the color of the door, I unfortunately lost the swatches and can’t remember the exact color, all I know is that it’s her favorite, cyan! I hope this video helps you get to know our girl just a bit better! @Leah @cami #LeahStrong ♬ Make It Through – Leanna Crawford
Leah continues to inspire her family, and they hope that by sharing her story, Leah’s passion for life will inspire others and increase awareness about CHD2.
“I can’t imagine what it would be like to be in Leah’s body and thoughts. And yet she still finds joy, grins, and plays, which is simply amazing,” Melissa explains. “And that strength right there, I mean, it will ground you, and it will provide you with more strength than 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 says. “She has taught me so many things, including how to persist. It’s great, but it’s difficult to capture and encapsulate all of the words that characterize this kid and the pleasure she has, despite the trials and hardships she has every day. She does it every day, with elegance and a cheerful heart. And I’m fortunate to be her mother and experience this adventure with her.”