A North Carolina mom and dad were able to record the last time their 8-year-old daughter, who suffers from “childhood Alzheimer’s,” said “I love you.”
Keira Esposito, who is now 8 years old, was diagnosed with Sanfilippo syndrome, a rare genetic condition that causes fatal brain damage, in September 2015.
The syndrome - often dubbed childhood Alzheimer's - is caused by an enzyme deficiency, which means that Keira’s body can’t break down waste products in her brain and other parts of her body.
In April 2016, her parents captured the special “I love you” on camera but they had no idea it’d be the last time they’d hear the words from their daughter.
“As a parent [you] know the firsts, the first time they take the first step, the first words they say, you know you record those dates, you know you can play those back,” Keira’s dad, Dave Esposito, told InsideEdition.com. “You never know or expect when the last time they're going to say something is and we just feel amazing and really lucky that we captured the last time she said it on film.”
Sadly, 70 per cent of children with Sanfilippo syndrome die before their fifteenth birthday, a reality Keira’s parents face every day. Since that 2016 video, Keira’s condition has continued to worsen.
The 8-year-old can’t speak at all now. Eventually she will lose the ability to walk and eat before her organs start to fail, but her parents are trying to focus on enjoying the moments they have left with Keira.
“Keira's our entire world. She's the biggest blessing that we've ever had. She brings us joy every single day especially with her laughter and constant smiles,” Elise Esposito, Keira’s mom, said.
The parents said looking back on the "I love you" video is hard for them to now. They do not do it often.
Keira is still able to communicate with her patents in nonverbal ways, but it can still be hard at times, they explained.
“Since she's lost her speech, she has no way to tell us what her needs are and even more importantly what's bothering her,” Elise Esposito said. “It really quickly becomes a guessing game and even detective work and that is really both scary and incredibly frustrating as her mother to deal with that on a daily basis.”
The parents now work closely with the Cure Sanfilippo Foundation to help raise research funds and awareness by sharing Keira’s experience with the terminal illness that has changed every aspect of their lives.
Although Sanfilippo is incurable, the organization raises funds for research and clinical trials - some of which are currently in place.
“Keira’s diagnosis changed every part of our lives. We are very private people but Keira has made us public because we feel compelled to share her story to raise awareness,” Elise Esposito said.