This is the heartbreaking moment a little girl with rare ‘childhood Alzheimer’s’ told her mom and dad that she loved them for the last time.
Keira Esposito, now eight years old, was diagnosed with a rare genetic condition called Sanfilippo syndrome in September 2015.
In addition to heaving other serious side effects, the condition progressively stole her ability to speak — meaning that when her parents recorded her saying ‘I love you’ to them two years ago when she was six, they were actually preserving the last time she’d ever speak those words.
Heartbreaking: Keira Esposito has a rare disease called Sanfilippo syndrome
Sad: She was five when she was diagnosed; she is now eight years old
The disease: Sanfilippo syndrome is caused by an enzyme deficiency and is often called childhood Alzheimer’s
Sanfilippo 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.
Seventy per cent of children with Sanfilippo die before their fifteenth birthday — a reality Keira’s parents, David Esposito, 42, and his wife Elise, 43, face every day.
‘Keira is eight right now and we are painfully aware of our time together,’ David said.
‘Keira’s illness began with a cognitive degeneration, but eventually she will lose the ability to walk, she will lose the ability to eat. Eventually, her organs will go into failure.’
Once able to communicate with her parents, Keira’s vocabulary has deteriorated in the years since her diagnosis, meaning that she can no longer speak and has a cognitive level of a six- to twelve-month-old.
Scary: Seventy per cent of children with Sanfilippo die before their fifteenth birthday
Tough: The little girl’s parents caught her on camera saying ‘I love you,’ which turned out to be the last time she ever said it
Sick: The disease is causing her brain and body to deteriorate
‘When Keira was diagnosed she had about four or five words, but now they’ve all been lost, David added. ‘She can’t speak at all, and although you can see she’s trying so hard, she just can’t get it out.’
Tragic footage filmed by David in April 2016 captured the last moment Keira told her parents and baby sister Keaton she loved them, but the dad says it is difficult to watch it now that Keira can no longer speak.
‘As a parent there comes a point where you realize she hasn’t said Mommy or Daddy in a month and you remember she probably never will say them again,’ David said.
‘We feel very lucky that we captured the last time Keira said ‘I love you” on camera. We are very glad that we have these things on film, but it is very hard to watch. We do not do it too often.’
In January, David and Elise, who also have a two-year-old daughter named Keaton, celebrated Keira’s eighth birthday at a trampoline park, which David said was bittersweet.
Progression: Keira can no longer speak and will eventually lose the ability to walk and eat
Happy times: They celebrated her eighth birthday at a trampoline park in January
Change: Keria’s parents work with the ure Sanfilippo Foundation to help raise research funds and awareness by sharing Keira’s experience
‘Keira loves playgrounds and is really active so she loved it. She loves the Happy Birthday song, so it was a great day for her,’ he said, but added: ‘For us, every birthday she has had since the diagnosis is bittersweet. For us, as her parents, it’s just another year closer to losing her.’
In March 2017, the family moved from their home in Charleston, West Virginia to Charlotte, North Carolina, where they now live, to seek better medical care for their daughter.
The couple 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.
Emotional: ‘For us, every birthday she has had since the diagnosis is bittersweet. For us, as her parents, it’s just another year closer to losing her,’ said her dad
Family bonds: Keira has a two-year-old sister named Keaton
Readjusting: The parents explained that, despite being incredibly private, they were motivated to share their story, and that of their daughter, in order to help raise awareness
‘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.
‘When she was diagnosed, all of our planning for the future stopped. As a family we very much live in the now,’ he went on. ‘But you have to stay positive because there’s no other option. You have to fight back because the other option is to give up on Keira.
‘There’s a certain wisdom that comes with having a child like Keira and going through this as a family. You realize just how fragile life is.
‘People always say to us, “I don’t know how you do it,” but anyone could do it because when you’re in that position you just have to.’