Once upon a time, a little mermaid was born in Minnesota. On May 15, 2003, she burst forth four weeks early as the first child to her excited parents, Brian and Cindy Ullman, who named her Alyssa “Ally” Jule Ullman.
But soon these overjoyed parents were told some troubling news. Ally was born with Rubinstein Taybi Syndrome, a genetic mutation on her 16th chromosome that would threaten her life. If Ally lived past her first few days, she would face many serious complications.
“We don’t know what causes this,” the doctors said, “but there are only 1,000 cases in the entire world. She won’t ever speak or run and will be very small in size.”
The Ullmans looked at their beautiful daughter and knew she was a fighter. They decided to live every day to its fullest and treat every new morning with her as a gift. Some days were harder than others. Her parents would never forget her first surgery because they knew in their hearts how urgent it was.
“Either you do this surgery today, or we’ll bring in another surgeon who will,” they insisted.
Later, the surgeon told them if they hadn’t followed their intuition, Ally wouldn’t have made it. This happened several times in Ally’s more than 80 surgeries.
Cindy describes Ally’s condition as a cross between Downs Syndrome and autism with other serious medical issues. “Because Ally had conditions we couldn’t fix, we accepted and loved her, and nothing is more important in life than love,” Cindy says. “She was the light of our lives, and we were thankful for her every day.”
In 2005, the Ullmans moved to Lee’s Summit, and three years later welcomed their son Landon (now 12), a supportive brother with a soft spot for special-needs kids.
When Landon went to the skatepark, so did Ally. Her parents pushed her wheelchair up and down the ramp. When they hiked in the mountains, Ally went in a backpack strapped to Brian or Cindy. On long family bike rides, Ally rode along in her child seat. Her family made sure she enjoyed every adventure.
But no adventure compared to Ally’s mermaid days. From her first bath, Ally loved the water. Years later, in swimming therapy, Ally kept trying to take off her life jacket.
“I decided to remove it so she would quickly realize the reason for it,” Cindy says, “but when I did, Ally jumped from my arms, went underwater, and glided the length of the pool! I didn’t even know she could swim, but she swam like a mermaid underwater with her gorgeous dark curly hair floating around her.”
Sometimes, Cindy had to tell the lifeguard not to panic. Others watched astonished at how long she could hold her breath. Although Ally couldn’t tread with her arms, she would glide gracefully underwater, pop up for air, and dive under again. On land, Ally had a wheelchair, but underwater her limitations vanished, and she was whole, happy and free.
Although her parents knew that Ally belonged in her life-skills class, they were adamant that Ally look like all the other kids.
“I dressed her cute, and she had lots of trendy and fun swimsuits,” Cindy says. “Ally would light up when she put one on, and then like a mermaid, left a little sparkle behind her.”
Ally also had a favorite song she played repeatedly on her iPad—“I Can Only Imagine” by Mercy Me. When Ally was about 6, she was personally serenaded by the band at their concert. Because it was the last song, Ally had fallen asleep, but when she recognized it, she woke up and threw her hands skyward, as if portending the day that she would “stand in Your presence or to my knees will I fall? Will I sing hallelujahs? Will I be able to speak at all?”
For the last three months of her life, Ally fought hard at Children’s Mercy Hospital where she battled serious bowel issues. On Nov. 18, 2019, Ally passed at the age of 16. More than 500 people attended her funeral.
“The day she passed, the sky was bright pink like cotton candy,” Cindy says. “I walked to my car, and my doctor and six of my girlfriends were there. They told me that the moment I drove away, a rainbow appeared, as if signifying everything was going to be okay. So, Ally’s Rainbow Memorial was born.”
To carry on Ally’s legacy, the Ullmans teamed with Coldwater Charities of Lee’s Summit, where annually on Ally’s May 15th birthday they will donate new and gently used swimsuits in all ages, sizes and genders that they collect year-round.
“Every kid deserves a swimsuit,” Cindy says. “We collected nearly 90 swimsuits for Ally’s first heavenly birthday. We’re so thankful for the thoughtfulness of her peers from Lee’s Summit West (“West Side Girls”) and their theatre department who have collected swimsuits in her honor. We just want kids of all sizes to feel good in their swimsuits, so that they, like Ally, can leave their sparkle wherever they go.”
For swimsuit donations, contact: allysrainbowmemorial@outlook.com
“If we could ask people to remember one thing about Ally, it would be that she was an amazing beacon of light. Through all she endured, both physically and mentally, she was and always will be our miracle. Her diagnosis did not define her, she defined herself. She was happy, she was loved, she was a fighter and will always be an amazing gift.” — Brian and Cindy Ullman