fbpx

Derwood Father Who Lost His Son Offers Gift of Music to Children’s Inn Family

A teenager with a rare genetic disorder headed to Hamilton with her parents, brother

| Published: |
0

Meghan Kacinski, 13, holds up her family's tickets to see Hamilton at the Kennedy Center earlier this month.

Via Children's Inn

As she climbed into a limo on Sept. 2, her lavender purse a perfect match with her gleaming nail polish, 13-year-old Meghan Kacinski reminded her mother of Cinderella on the way to the ball.

Meghan had spent months undergoing a bone marrow transplant at the National Institutes of Health in Bethesda, a treatment for a rare genetic condition that can cause recurring viral infections. She’d been through radiation and chemotherapy and dealt with the loss of her hair. She’s spent months living away from her Long Island home and her two dogs, Eve and Vixen.

But that Sunday night was about celebration. Meghan and her family had four tickets to see the hit musical Hamilton, and they were headed to the Kennedy Center.

“It was almost like her little graduation ceremony reception, because soon, she will be able to go home and be discharged and try to get back to normal life,” Meghan’s mom, Connie Kacinski, said.

The tickets were gifts to the family from Audie Atienza, a Montgomery County resident who founded the XA Project nonprofit after the 2014 death of his 9-year-old son from a rare seizure disorder. The organization’s goal is to give children with life-threatening illnesses the opportunity to experience the arts.

The XA Project, named after Atienza’s son, Xavier, each month typically gives one or two families staying at the Children’s Inn on the NIH campus the opportunity to attend a performance. Last Sunday’s event was a special one for Atienza, falling five years from the day that Xavier went into the hospital with brain swelling.

“I wanted to do something to commemorate and honor him and to give a family an unforgettable experience in Xavier’s name,” Atienza of Derwood said.

The project’s mission stems from Xavier’s love for the arts—he was a dancer and martial artist who’d earned his black belt before age 8.

The weekend after Xavier’s funeral, Atienza said he traveled to New York City to get away for a bit. While there, he asked his brother for help scoring tickets to the Broadway show Wicked, because his brother knew actress Alli Mauzey, who was playing Glinda the Good.

Atienza said Mauzey gave him and his daughter house seats for the show and later met them for photographs and to show them around backstage.

“For once, after months of just dealing with the darkest period of my life, I found myself smiling because it was such an incredible experience,” he said.

That experience inspired Atienza to found the XA Project, which has been able to provide more than 800 tickets to families over the past four years.

The nonprofit turns each outing into an experience, often complete with meals and limos, through partnerships with businesses, arts organizations and the Children’s Inn, where families and children stay while receiving medical treatment at NIH.

Meghan Kacinski and her family traveled to D.C. in a limo for the Hamilton performance. Via Children’s Inn.

Aisha Campbell, the inn’s assistant director of program operations, said families at the inn are often dealing with schedules crammed full of medical appointments, and the XA Project events provide precious time together.

“It provides you a little experience that relates to something outside of being sick and outside of hospitals,” Campbell said.

She said Meghan was so excited in the lead-up to the Hamilton show that she planned a trip to the Macy’s makeup counter for a tutorial on filling in her eyebrows and applying eyeshadow. Progressions Salon Spa in North Bethesda offered a free hair appointment to Meghan and Connie Kacinski, and the mother and daughter received gift cards to buy clothes to wear to the performance.

“She’s 13, and this is something a mother should be doing with her daughter,” Kacinski said.

On the night of the performance, the Children’s Inn treated the family to dinner at Mon Ami Gabi in downtown Bethesda. Kacinski said Meghan rarely gets to eat out because her genetic disease has left her allergic to milk, nuts, shellfish, rye, flax, chickpeas and a number of other foods.

As a precaution, the restaurant sent its chef out to the family’s table to make sure Meghan’s burger, fries and string beans were cooked to suit her. The family invited Atienza to join them, and Kacinski said it was the highlight of her evening to talk to him over dinner.

Then, Meghan, Kacinski, her father William Kacinski Jr., and her 17-year-old brother, William Kacinski III, who suffers from the same genetic condition as his sister, climbed into a limo and headed to the Kennedy Center. It was the first time they’d ever seen a performance of a show that had played on Broadway, Connie Kacinski said.

“I was interested in seeing (Hamilton),” Meghan said after she’d seen the show. “I just didn’t think I would ever get to.”

Kacinski said the family hopes Meghan will be able to return home in coming weeks and—with the bone marrow transplant complete—live free of many of the symptoms she’s endured since infancy.

From left, William Kacinski III, William Kacinski Jr., Meghan Kacinski and Connie Kacinski. Via the Children’s Inn.

Bethany Rodgers can be reached at bethany.rodgers@bethesdamagazine.com.

Back to Bethesda Beat >>

Newsletters

Leading Professionals »

Dining Guide