From Tears to Triumph: A Young Down Syndrome Ambassador Shines Bright

This week, the global company Gerber made an exciting announcement – the new 2018 baby ambassador is Lucas Warren, a one-year-old with Down syndrome, chosen from tens of thousands of applicants.

Warren's endearing smile is truly captivating, and the inspiring role he embodies is commendable. However, Gerber may not have realized that in our country, there's already an amazing ambassador with Down syndrome. Meet Or Shakibay, who has been featured repeatedly in different campaigns over the past two years and is considered the first ambassador with Down syndrome in the country.

Accepted with Love

A glance at Or's pictures captures the enchanting charm she exudes, for just like her name, Or is filled with light and zest for life. Her happiness radiates visibly.

"Baruch Hashem, Or is a wonderful child who brought immense light into our lives," says her mother, Lital Shakibay. Lital recalls the challenging pregnancy that preceded Or's birth. "At 31, with two young children aged five and three, the initial months of pregnancy were usual and uneventful. In the third month, I underwent the nuchal translucency scan and was told there was a 1 in 17 chance my baby would have Down syndrome. My husband and I were naturally anxious but hoped for the best. Deep down I believed she would be among the sixteen who do not have the syndrome and would grow up like a regular child."

But as months passed, our suspicions intensified. "We went through numerous tests," Lital shares, "including a fetal echocardiogram that indicated an issue, a system scan showed a short femur and absence of a nasal bone, and other signs suggesting the baby likely had Down syndrome. As the due date approached, these concerns increasingly turned into certainty. I was constantly advised to undergo an amniocentesis for 100% certainty, but I refused."

Why?

"Because I knew that upon definite identification of the syndrome, I'd face a decision about terminating the pregnancy, which I didn't want to confront. Termination was never an option for me. I always said I'm a believer, and whatever Hashem gives, I accept lovingly."

During the pregnancy, Lital mentions she experienced significant spiritual strengthening. "My husband and I grew much stronger in our faith, and I even decided to cover my hair. Three days after making this commitment, my husband went to seek a blessing from Rabbi Yoram Abergel. The rabbi said something that moved us deeply. He didn't say our baby wouldn't have Down syndrome, but noted: 'You have a healthy, complete daughter.' He added: 'Know that your wife has caused a great stir in the heavens.' My husband returned in awe, and I was deeply touched by his words. This strengthened us, believing that whatever Hashem provides, we embrace with love."

"I Immediately Knew She Had the Syndrome"

The day of Or's birth was the moment of certainty for Lital. "The birth was relatively easy, and as soon as the baby entered the world, I lifted my head from the bed and immediately recognized in her facial features that she had Down syndrome. Then I leaned back and told my husband behind me: 'This is it.' At first, he didn't grasp it, and I continued: 'This is it,' feeling shocked. It felt as if I hadn't known beforehand there was a chance for the syndrome. For me, that was the first moment I realized our concerns had become reality, and there was no turning back. Our daughter had Down syndrome, and from here, we needed to learn how to cope."

The initial days in the hospital were extremely challenging for her. "The birth was on a Thursday, so by Shabbat, I was alone with myself. I lit candles and didn't stop crying. I remember taking care of the baby diligently but continuously weeping. Nursing and tears would fall on her. I loved her, but felt a barrier preventing closeness."

For the entire month following, Lital and her family stayed at her parents'. "Those days were particularly hard with people's reactions. I couldn't handle the pitying looks and had no energy for questions. I remember going out with the stroller one day, covering it with the canopy to avoid those looks and questions. I didn't want pitying glances, just to visit the well-baby clinic and return home without unnecessary remarks."

But when Or was one month old, a turning point occurred. "She suddenly developed a fever," Lital recounts, "out of nowhere, she had a temperature of 40 degrees. I rushed her to the hospital where tests and checks were conducted to determine the fever's cause. I stood helplessly aside, unable to aid my baby, and cried like never before. At that very moment, I felt a profound bond with Or. I told myself: 'This is my daughter, and if I don't take care of her, no one else will.' It was the first time I truly connected with her, feeling Hashem sent her this fever, which miraculously disappeared just as it came, simply to aid in forging our connection."

Since that day, Lital has been clear about having no shame or need to hide her daughter. "It was evident to me that from then on, she is our pride, and we will only grow together with her. I returned home with Or and explained to my kids, in their terms, that they had received a sweet sister named Or with Down syndrome. When they asked what it meant, I replied that she would do everything at her own pace, and we must love, care for, and nurture her. I explained simply to them, and today, baruch Hashem, we are reaping the benefits, as there is a special bond between them filled with encouragement and love."

When Or was two and a half years old, a younger sister, Adel, joined the family. "Initially, we were apprehensive about the pregnancy with Adel," Lital shares, "having already experienced the syndrome, we feared it might not be normal again, but ultimately, it was the smartest move we made. The relationship between Adel and Or is simply incredible. They're like twins in every way, sleeping, eating, and playing together. They're always dressed alike. They love each other so dearly."

Four-Year-Old Ambassador

Lital shares that since Or was one, she has been part of the 'Shalva' program, and from age four, she's been modeling in various campaigns.

How did you get involved in photography?

"It began with a remarkable lady named Shira Ronen, who founded the 'Tasmanutk' organization to raise awareness of children with Down syndrome. Concurrently, she opened a Facebook page called 'I have a Tasmanutk Wonder,' posting a picture with a story of one of the many children across the country each day. Shira also reached out to agencies representing children to include kids with Down syndrome in photoshoots, but faced repeated rejections. Eventually, an agent named Eliana from Trendy Kids declared she was willing to include a child with Down syndrome in her campaigns. Shira sent a variety of children's photos, and Or was chosen among them, designated the first ambassador with Down syndrome in the country."

Does she enjoy it?

"Very much. At four years old, she didn't quite understand it, but now she's well aware and collaborates beautifully. Her participation in campaigns enhances her confidence tremendously. She's always saying: 'I'm beautiful, I'm beautiful,' and she joins me in selecting clothes, hairbands, and shoes for the campaigns. Each time, I prep her, and we plan together what she'll wear. I remind her always to behave well and prepare her for potentially exhausting shoots."

For "regular" children, posing can be tiring and exhausting. How does Or manage?

"Well, obviously, I prepare her well in advance, ensuring she rests properly at night and eats well. I accompany her throughout the photoshoots. The moment I notice she's struggling, I request a one-hour break from the crew, which they usually agree to."

Recently, Lital mentions that Or participated as an actress in a campaign. "Last week, she was part of a music video for singer Yaakov Shwekey. In the video, another child with Down syndrome joined her, both portraying young girls, embodying a song about a mother raising a child with Down syndrome. The song is astonishing and touching, and the clips are exceptionally unique."

Honestly - is the exposure challenging for you?

"Not at all. I'm proud of my daughter, I'm delighted with her. Moreover, through Or's campaigns, I've conversed with many, and I feel that sharing our story benefits me too. Every conversation about her, every shoot, made me realize how happy I am with her. I often ask myself – how was I even able to cry in the first month? How could I have been in that place? However, I'm certain Or's visibility benefits the world, contributing to the understanding that children with Down syndrome are as capable as anyone else, and my Or is the proof."