Down Syndrome Advocate and Mom Elena Fong Opens Up About Her Own Misconceptions

Kara Warner
·7 min read

Courtesy Elena Fong

Elena Fong does not shy away from addressing the most challenging aspects of being a parent to a child with Down syndrome.

The Oakland-based mom of two and advocate has learned so much from her daughter Wynter, 4, who has Down syndrome. Fong is brutally honest in sharing her family's experiences via her Instagram account with the hope that it might help other families and that by speaking up, the medical community will adjust how they talk about diagnoses that are not considered typical.

"The way the news was presented to me, it was like this horrible thing," Fong, 41, tells PEOPLE in this week's issue. "The doctor told us everything that Wynter would not be able to do, what a burden she would be."

She adds, "I want to change that narrative. I'm sharing my experiences because I want people to understand that Down syndrome is not this thing to be feared."

Fong, who also has a son Nova, 2, says she and her husband Will tried for three years to get pregnant. "It just wasn't successful," she admits. "We had two miscarriages. It was a really hard time. We finally decided to do IVF, but we honestly could only afford to do it once."

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Fong says all of their hope eventually rested on one embryo, which the specialist told her did not have a good chance of being successful.

"Four of my eggs got fertilized, but none of them ever made it," she recalls. "I had gotten the call at work and the embryologist was like, 'I'm so sorry to have to tell you this. That last embryo, the cells didn't split. It doesn't look like it's going to be successful. We even gave it a couple of extra days.' And I was devastated. This was our only hope. All our hope was in this one little embryo, because the other ones didn't work out."

Fong says she was so obviously devastated that she thinks the embryologist decided not to give up because he felt badly for her.

"He said, 'I'll give it one more day and I'll call you in the morning. But don't expect good news.' I prayed and prayed for a miracle. I'm Buddhist, so praying for me is chanting," she says. "Even though it felt like this was not going to happen, I just was like, 'Please, please.' "

"And the next morning the embryologist called and he said, 'I don't know what happened. The cell split. We biopsied it and sent it off to the lab. I'll let you know what the results are,' " Fong recalls. "I've never cried and laughed at the same time in my life, and it's the weirdest feeling, but that's exactly what I did."

Fong says from that moment, she felt like it was a message that their baby "wanted to be here. She was like, 'I choose you to be my parents. This is going to happen.' "

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The couple wanted to find out the sex when they could and also decided to go through with genetic testing.

"We got the test results back and we found out we were having a girl, but then we also found out that, more than likely, she will be born with Down syndrome," Fong recalls. "I was praying and hoping, at that time, that she didn't have Down syndrome, because I knew nothing about it. I let myself grieve, I let myself feel all the feelings that I needed to feel."

"But at the same time, there's this kind of switch that happened in my brain," she continues. "Because we'd go in for the ultrasounds, I'd see her little feet, I'd see her little hands. I'm hearing her heartbeat. She's my child. She fought so hard to be here. The medical community needs to do so much better when it comes to Down syndrome, or any type of diagnosis that's not considered typical or normal. I dreamed of and wanted this child so badly that, do you think we would want to hear, 'You can terminate?' "

Fong and her husband threw themselves into their own research and Fong started connecting with other parents of children with Down syndrome, which helped her eventually drown out some of the noise of medical statistics.

"There's all these high probabilities of these things that could happen. And I just had to let go of that and just be," she says. "I wanted this child so badly. I loved her so much already."

Elena Fong/Instagram From left: Will, Nova, Elena and Wynter

Fast-forward to Wynter's arrival, Fong readily admits coming to terms with one of her greatest fears.

"I feel really silly saying it out loud, but I have to share that one of my biggest fears was not necessarily the Down Syndrome, but I was afraid that I wouldn't be able to see myself in my daughter," she says. "Growing up an only child with a single mom, that was the one thing I longed for, was just to have that connection, and to see myself in someone else."

"I thought, 'When I become a mother that day will come.' And when I saw her, when I looked at her I was like, 'She's my daughter. I don't see anything else. She is my baby,' " the proud mom says. "The NICU nurse was so amazing. She picked her up and she immediately put her on my chest. Wrapped us up. It was the best feeling in the world. It was like, 'I'm home. This is my heart. This is everything.' "

Again, Fong does not shy away from addressing the challenges, but she is so grateful to Wynter for what she's taught Fong about love.

"It's one of those greatest gifts that you can get. I think our children just show us and they teach us what unconditional love truly means. They just break you open, and they're like, 'Nope. You've got so much more to learn.' And they're so right. I'm still learning. Wynter is only 4, but it's been amazing. I always say, 'She's my greatest teacher. I'm following her lead.' "

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The actress opens up about how having children redefined her definition of kindness, what she’s learned about cognitive diversities and disabilities after her daughter was born with Down syndrome, and how much she values the disability community.

Fong, who identifies as mixed race, Asian and Black, and also works with Black Lives Matter and Black Disabled Lives Matter, emphasizes the fact that our differences should be celebrated.

"We all come in different sizes, and shapes, and look different. It's about accepting those differences. That's the beauty of humanity," she says. "We are all different. Some of those differences are bigger than others, or greater than others, or more obvious than others, but that's okay."

Fong wants people to be open to knowing people with special needs, and that if you meet her daughter Wynter, "she has the best laugh. Her laugh will make you laugh," she says.

"I also want people to know that if they gave her a chance she will change your mind about what you think you know about Down syndrome," she adds. "She is smart, capable, loving and valued. She is my bright light on the darkest of days. She will show you a world and love that you never knew you were missing. She is pure magic."

For more information about Down syndrome or to donate to research, education and advocacy efforts, visit globaldownsyndrome.org.

PEOPLE's second annual Kindness Issue is dedicated to highlighting the ways, big and small, that kindness can make a difference and change lives. Click here and pick up the issue, on stands Friday, Oct. 30, for more stories on the impact of kindness from Priyanka Chopra Jonas, Sterling K. Brown, Heather Locklear and other stars, as well as everyday people practicing kindness in their communities. To share the story of someone who’s done something exceptionally kind, email kindnessawards@peoplemag.com.