The parents of a Dorchester girl who was diagnosed shortly after her birth with a rare genetic disorder have organized a fund-raiser casino night at Florian Hall this Saturday to help spread awareness of the disease.
The Mal’s Pals Foundation – named by Micayla and Ryan Bickerton for their three-year-old daughter Mallory – has zeroed in on Rubinstein-Taybi Syndrome (RTS), a condition caused by a genetic mutation in one of two genes that results in varying degrees of moderate to severe developmental delays, as the focus of their fund-raising effort.
Like most lay people, Micayla and Ryan had never heard of the condition until Mallory’s pediatrician broke the news at Brigham and Women’s Hospital shortly after her birth. The day after they brought their baby home, an emergency brought them to Children’s Hospital where she was admitted to the Neonatal Intensive Care Unit (NICU) for two and a half weeks. The parents soon learned that RTS presents serious health complications over time, including an increased risk of tumors, eye abnormalities, and the potential for a range of intellectual disabilities.
With limited information and resources available to them close to home, the Bickertons decided they would work to raise awareness of RTS while also lending support to other RTS families in a positive way. Last spring, with the help of their friends Michael and Sunny Dorsey, the Bickertons established the non-profit Mal’s Pals Foundation.
On Saturday, they will host the first fundraising event — the casino night at Florian Hall with a 7 p.m. start. Funds raised from the event will help them launch their website with need-to-know information, testimonials from parents, helpful blogs and articles, and a physician directory. The money will also help benefit the 2018 Northeast RTS Reunion in Baltimore, which the Bickertons attend each year.
The casino night’s grand prizes include a MGM Grand Las Vegas Trip with airfare voucher and dinner on the Vegas strip; a sports package including Celtics tickets, Green Monster seats with signed Mookie Betts baseball, tickets to a Bruins vs. Blackhawks game; a date-night wine-tasting tour of the Boston Winery with a gift card to Venezia.
“We are truly grateful to all who have shown interest or who have donated already. We just want this event to be a success and for everyone to have a great time,” said Micayla. “We have an end goal of helping families like our own and it’s amazing to watch the generosity of this great place called home.”
Admission for those who plan to play table games is $100; general admission is $30. Tickets can be purchased at the door or by e-mailing Malspals.firstname.lastname@example.org.