Moving into your first apartment is a huge milestone that marks independence and freedom. But for TikToker LissaJade's (Lissa.jade1) 18-year-old daughter, Leah, it's something she will never get to fully experience due to an extremely rare medical condition called CHD2–described as a genetic condition that causes seizures, abnormal brain function and intellectual disabilities–as well as Lennox-Gastaut Syndrome (a rare form of epilepsy).
To create a special place for Leah to spread her wings, LissaJade designed a brand new entrance for the door to Leah's room that mirrors her very own apartment–complete with a mailbox, wreath, doormat and the number "206." Besides the thoughtful additions, LissaJade also re-painted Leah's door a rich cerulean blue and installed a doorbell.
"Due to my daughter's diagnosis, she won't ever have a home of her own, so I created an apartment door for her bedroom," she wrote in the video.
The sweet gesture for her daughter amassed a number of emotional comments. One TikToker wrote, "TO BE LOVED IS TO BE SEEN," and another added, "You're giving her the freedom of being an adult while also acknowledging you'll be there for her in an instant, no matter what. 🥰"
Other parents with children in Leah's situation also shared their personal stories. "I, too, have an intellectually challenged adult child due to brain damage (hydrocephalus). She is 23 now. This video warms my heart," one wrote. Another added, "I absolutely love this and putting in my idea book for my daughter who has Angelman Syndrome and will always live with me as well. God bless you both!!"
Lissa shared more about Leah and her health journey in a follow-up video. "Please meet the girl behind the door!" she wrote in the caption, adding, "I hope this video helps you get to know our girl just a bit better!"
@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
LissaJade offers more details on her CHD2 diagnosis, sharing that it took 11 years and visits with doctors in 3 different states to finally receive her CHD2 diagnosis in 2020. "She was 1/44 in the world," she wrote in the video, explaining that she has also had three different brain surgeries to have a vagus nerve stimulator (VNS) device and a Deep Brain Stimulation (DBS) device implanted—which helped minimize her seizures. LissaJade shared that before these were implanted, Leah was having 80 seizures a day. Despite the surgeries, Leah still takes 30 pills a day and struggles with epilepsy.
"She will never experience the mundane things we all take for granted daily, but she has something we all lost, and that's to see the world through a child's eyes. With brain damage and regression, it has frozen her in time," she wrote. "With CHD2 also came intellectual disability that made her around 5 to 7 years old."
Despite these challenges, LissaJade remains beyond grateful for caring for Leah as her mother through it all. "I'm not sure why God blessed me to be her mama, but I'm beyond thankful," she added. "I almost lost her in 2021 due to a tonic clinic seizure. And when she woke up days later, she squeezed my hand and said, 'I still fight!' And that's my Leah."
LissaJade's love for her daughter and Leah's tenacity have inspired thousands. This TikTok summarized it best: "What an honor to watch you be her mama. Thanks for sharing Leah with us❤️."
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