Shari Bailey knows birthdays can be among the most special celebrations in a child’s life—especially for children who don’t know how many of them they will have.
Of her 8-year-old twin girls, Lana and Laila, the latter has a rare congenital disorder, Jacobsen’s Syndrome, which occurs in only one in every 100,000 newborns. About 20-25% of infants diagnosed don’t make it past age 2.
Resulting from the deletion of Chromosome 11, it means Laila can’t walk or talk, and requires the assistance of a feeding tube and diapers, but she is still “one of the best joys of my life,” Bailey says.
“At the time [of her diagnosis] there were only about 100 cases in the world of the syndrome that existed,” she says.
That’s why Bailey—born in Cairo, Egypt and now living in Baltimore—wanted to celebrate Laila’s birthday milestones, and those of other local children living with disabilities whose lives every day are threatened with complications.
Her gala on Dec. 17 at Port Discovery Children’s Museum will help fund 75 birthday parties.
When she is not caring for her daughters, or having fun with painting, drawing, music and dance (“The love for the arts has transpired into my relationship with my kids, as we also love to do everything artsy together.”) she is the global vice president of a company that designs innovative materials for medical devices.
Your daughter Laila has had a rare congenital condition since birth. What has your experience been like as a parent?
The experience has been nothing short of intense. The word intense is not always in a negative connotation. I use this word because from the moment Laila was born I was on a mission to better understand her condition and find ways to help her. This involved intense thinking, research, compassion, caretaking and faith. Knowing that your child is born with something that impacts their life span is one of the hardest things a parent can endure. You find yourself trying to manipulate destiny by overcoming challenges that you and your child face on a daily basis.
What have been the unexpected joys in your journey so far?
Although there are some difficult days, I can honestly say there are more good days than bad. Laila is a ball of sunshine and everyone she comes in contact with feels her energy and falls in love with her. Some of the unexpected joys in my journey so far with Laila include learning to love in a different way. Laila is not affectionate. In fact, she’s the total opposite. I called her “Miss Independent”. Although she has high dependence to get her through her day from a physical perspective, her personality is very sassy and craves little emotional attention. So rather than the normal hugs and kisses, you typically get with children, some definite signs of love from Laila include: playing keep away with items she takes from your lap, or handing you the remote to turn on her favorite Mickey Mouse Clubhouse show, or grabbing your hand to help her attempt to walk around the house. Her twin sister, Lana, also gets a kick out of this. It’s so delightful to see the two of them play in a different way than most children. From banging on the kitchen countertop to see who can do it the loudest, to Laila cracking up while witnessing Lana doing silly dances…the joy never ends.
How do you balance work and family life, and what makes it easier?
I am a global leader, so I’m often tied up with work during most of the day, I’m also of the mindset that family comes first; therefore it’s certainly a personal motive to make sure that work and family life is balanced. Having the right level of support to help me care for Laila when she is not in school and when I am in work is necessary. One of my favorite sayings is to “take things one step at a time”. I live day by day, and as long as I do my best within a given day there’s always tomorrow to repeat my efforts.
You have supported local children who have developmental disabilities with birthday fundraisers. Why is this cause important to you?
We are happy to announce our birthday celebrations for Laila‘s Gift start in January 2023. We are so excited to celebrate the birthdays of these marvelous children. This cause is so important to me because I personally (and intimately) understand how important a birthday is for children that tomorrow is not promised for. Each year for them and their family is filled with trials and tribulations. These birthday celebrations are not just about adding one more year to the books, it’s about celebrating the resilience, determination, and successes of both the family and the child to get them through yet another year.
What’s one thing you hope your kids learn from you or your career?
One thing I hope my kids learn from me is to never give up… Faith and determination to not give up helped me fight through year-after-year until I got to the point where we beat the initial odds for Laila. Though her challenges are far from over, my family and I remarkably turned tragedy into triumph, and for that, I am [the] most proud. Years forward, I want… this experience [to] be the greatest example of how important it is to never give up, and if we try hard enough, we can achieve anything.
Favorite meal: Chick-fil-A
Favorite vacation: Disney World
Favorite book to read together: “Zigglebee”
Favorite inclusive activity in Baltimore: Bowling
Favorite local spot: Port Discovery Children’s Museum