Milton girl navigates life with rare genetic condition characterized by being very friendly, trusting
ATLANTA - When Alyssa Okeyo's fifth grade class started studying biology, and specifically cells, the daughter of two career scientists wanted to really see them for herself.
"And, she had convinced Dad to buy her a microscope, so she can look at the cells," her mother Jenty Okeyo smiles.
At 12, Jenty and George Okeyo's youngest daughter loves science and history, but also birthdays, and theme parks, and music and dance, and, most all, people.
Alyssa Okeyo is kind of the ultimate people person.
"She's a hugger, and she gives us unlimited hugs, and talks about kindness, and wants to be helpful, and wants to please," her mothers says.
Part of Alyssa Okeyo's hyper-friendliness is her personality.
Yet, her parents have learned, her outgoing nature may also be linked to a rare, complex genetic condition she was diagnosed with 3 years ago at 9.
It's called Williams Syndrome, and one hallmark is being very social.
"They don't all have the personality where they'll walk up to complete strangers on the street and hug them, but many will," says Dr. Jocelyn Krebs, a professor of biological sciences at University of Alaska Anchorage.
Krebs researches Williams Syndrome.
Her teenage son has Williams and is also on the autism spectrum.
"Developmental delay is a sort of core part of the syndrome, but it also has some really unique characteristics, including often a hyper social, outgoing personality," Krebs explains.
Alyssa's mother says she's extremely friendly with strangers.
"She sees the world as being, you know, full of kindness and love, and let's all hug and, you know, let's all be best friends," Jenty Okeyo says.
Krebs says an inability to understand the concept of "stranger danger" is a huge risk.
"So, there's a lot of effort and research into kind of social curricula that can help kids understand, who's a friend who isn't, and how do you react to a stranger," Krebs says. "Because they will notoriously go off with anyone who gives them a smile."
That's something the Okeyos, originally from Kenya, are working on with Alyssa.
"Having boundaries, and knowing who to hug and not, you know, just not hugging everyone just because you've met them," her mother says.
Soon after Alyssa's diagnosis, the Okeyos found the Williams Syndrome Association, and started researching her condition.
They learned Alyssa, who was born with a heart murmur, is at higher risk of cardiovascular problems, so she gets regular checkups.
Williams syndrome is a spectrum, effecting each person differently.
Alyssa has the distinct facial features, a hypersensitivity to loud noises, learning and attention deficits, and -- lately -- anxiety.
"For her, you know, she feels every emotion," Jenty Okeyo says. "I feel that she feels it a hundred times more than the typical person. So if it's sadness, she's going to be really, really sad. If she's happy, she's going to be really, really happy."
Overall, Alyssa is doing well, the Okeyos feel hopeful.
"A few weeks ago, she said, 'Well, I really want to go to college, but I know you guys won't be there, so I'm going to have to get used to that. So, I need to learn,'" Jenty Okeyo says. "So, we were very optimistic about her future and her outcomes and will support her however we can."