18-year-old Victor Pauca lives with Pitt-Hopkins Syndrome, an incredibly rare condition. But he doesn't have to face it alone. His devoted sister, Francesca Pauca, age 21, acts as one of his caregivers. And in this YouTube video, we get to hear their story.
Victor’s parents started to notice that he wasn’t reaching his developmental milestones when he was about six months old. He was then diagnosed with Pitt-Hopkins Syndrome at 2.5 years old.
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Pitt-Hopkins is an autism spectrum disorder that causes developmental delays and he was one of the first people in the world to be diagnosed with it. Pitt-Hopkins is caused by a mutation of the gene, TCF4 on the 18th chromosome.
Francesca talks about how the day-to-day with Victor is a team effort by her family. “Different people take on different tasks,” she says. “One by one we pick it all up and we do it together.”
Victor used to eat by mouth. Now, however, he requires four feedings with a feeding tube per day. His health can also be unstable and he has ended up in the hospital, but Francesca is right there with him through it all.
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Victor is nonverbal but he can communicate either nonverbally or through using different sounds that his family can understand. He does sometimes use a touch-chat. The family talks to Victor like he is any other 18-year-old boy.
The family also includes him in household chores. You can see a clip of him doing laundry.
Francesca goes to Princeton as a psychology major. She plans to return home after graduating college to care for Victor. She says she has been planning to do so for a long time. “It’s the only life I know,” she says when talking about taking care of him.
“I am 21 years old and I’ll be my brother’s caregiver in the future.”
While her parents still plan to be his caregiver for a few more decades, both she and her sister are committed to being his caregivers in the future. What an amazing thing for a sibling to do.
The family has also started the Pitt-Hopkins Research Foundation to help others.
Francesca took to social to educate others about how fulfilling caregiving can be. She says, “I would want them to know that the work that they're doing, especially caregiving, is important and it’s beautiful and it’s appreciated.”
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Francesca and her family are not only showing love to their brother, but connecting with their community, and others to help them in their own caregiving journeys. She is quite the inspiration!
“And the King shall answer and say to them, Truly I say to you, Inasmuch as you have done it to one of the least of these my brothers, you have done it to me.” - Matthew 25:4
h/t: GodTube
Featured Image Credit: Youtube/Inside Edition