When Aimee Albright and her husband Robert (aka R.D.) started a family, they knew there was a one-in-four chance for their children to be born with cystic fibrosis (CF), a genetic disorder that affects the lungs, pancreas and other organs. Both Aimee and R.D. carry one copy of the genetic defect, but since no previous family members had ever been diagnosed with CF, the couple wasn’t overly concerned, especially after their firstborn son, Adam, was born perfectly healthy.
Two years later, they were pregnant again. When their daughter, Melanie, only gained 10 ounces in her first four months of life, alarm bells sounded. Upon examination, Aimee and R.D. were told that their daughter had CF and pneumonia, and admitted her to the hospital on the spot.
“We didn’t have time to think about it,” Aimee Albright says. “We were dumped in the deep end first.”
Four and a half years later, Rosalie was their surprise baby who unfortunately arrived with a surprise of her own. She also had CF.
There is no cure for the chronic disease, and while advances are being made to improve the lives of those who have it, according to Cystic Fibrosis News Today, the average life expectancy of a person with CF in the U.S. is approximately 37.5 years.
Facing the fact that two of their three children would likely have their lives cut short was traumatic, but the couple’s strong Christian faith helped them process the news.
“Having that faith in God and trusting him, knowing that this is his plan and I don’t have to like it but that he knows more than I do, that is what got us through,” Albright says.
When Rosalie was diagnosed, they already knew what to do and what to expect.
“CF was already a part of our lives – everything was now times two,” says Albright, who homeschooled her kids in order to better take care of their needs.
This was important, given that every time one of the girls got sick with a cold, they were in the hospital for two to three weeks on intravenous antibiotics. This typically happened three to four times per year. When they weren’t sick, however, they were happy and busy.
When they were young, they both gravitated towards the arts and loved participating in Christmas pageants and other church programs. While Rosalie delighted in performing on stage, Melanie preferred the behind-the-scenes action like painting, set building and applying makeup.
In 2012, the sisters got involved with the Hendricks Civic Theater’s (HCT) production of “Aladdin Jr.” Shortly after that, the Biz Academy of Musical Theatre opened and the girls did “Beauty and the Beast.”
Melanie painted sets and helped with props. Rosalie was cast as the Enchantress, Marie, and was in the ensemble. Albright volunteered to be stage manager. By this point, the family was officially captivated by community theater.
In 2012 Melanie got extremely sick. Her lung function was at about 25% and she needed to be on oxygen all the time. She waited for double lung transplant that never came.
“There were too many people listed ahead of her and not enough registered organ donors,” Albright says.
Melanie passed away on January 14, 2014, at the tender age of 18. A month after Melanie passed away, Rosalie caught respiratory syncytial virus, which caused a great deal of damage to her lungs. That virus eventually led to the need for a double lung transplant. Despite her circumstance, Rosalie insisted on not giving up theater. While rehearsing for the show “Shrek,” she had oxygen waiting in each of the wings of the stage.
“She would go on stage, do her scene, then come into the wings for oxygen, maybe throw up, then go back on stage,” Albright recalls.
The theater kids – her “tribe” as Albright calls them – visited Rosalie in the hospital, sent constant texts, FaceTimed with her, and prayed. Six months to the day after Melanie’s passing, she received a double lung transplant.
Her first day back at rehearsal, the director told Rosalie to take it easy, but she didn’t know how to do that. Her energy had returned, and she was ready to expend it. The following year, she landed her first lead – Margo in “Legally Blonde.”
Rosalie did well for a year before her body began to reject the lungs. Rosalie was in a hospital in St. Louis when the family received the devastating news that her donor lungs were failing. Rosalie, 15 at the time, opted not to have a second lung transplant, and her parents respected her choice.
She went back on oxygen, continuing to perform in shows and take her dance classes and vocal lessons. In the spring of 2016, the Biz put on “The Lion King” and she was cast in the ensemble. Again, there was oxygen on both sides of the stage, and she wouldn’t let her condition stop her from doing what she loved. When she was off stage, friends sat with her as she got her oxygen.
Rosalie passed away on May 4, 2016, a month before her 16th birthday. She requested no funeral service and asked that friends share stories instead. One boy spoke about walking into rehearsals on the first day as the brand-new kid. He saw a circle of kids on the floor, one of whom was Rosalie. She invited him to join them.
“That’s who she was – always very inclusive,” Albright says.
After her second daughter died of CF, Albright wondered what to do with her life at that point.
The family discussed ways they could honor the girls and keep their memories alive. They didn’t want to create another community theater because between the Biz, HCT, and local schools, that was covered.
“I said, ‘What if we created a nonprofit to support youth participation in all aspects of theatre?’” says Albright, who is currently a student at IUPUI earning a degree in philanthropic studies. “Everyone loved the idea.”
In 2018 they created The Melanie and Rosalie Albright Foundation, with the tagline “Breathing life into theatre.”
They found that what kids need most is help paying for artistic endeavors, including production fees, vocal lessons, dance classes, art lessons and theater workshops. Albright had heard kids say they could only afford to pursue one interest. The foundation’s needs-based and enrichment-based scholarships, however, can help students’ families afford additional opportunities.
“We want to make sure that anybody who wants to try anything that’s performing arts related can do so,” says Albright, noting that when it comes to theater, it takes a village to create the magic. People are needed to build sets, take care of props and costumes, do hair and makeup, provide lighting and sound, handle audio-visual elements, play music in the pit orchestra, and more.
From its founding until 2020, The Melanie and Rosalie Albright Foundation awarded $750 in scholarships. In 2021 they have awarded $1,400 in scholarships.
“Kids can come here, trusting that they have somebody in their corner,” Albright says. “We want to provide a safe place for these kids to be who they are.”
For more information about The Melanie and Rosalie Albright Foundation, visit themrafoundation.org, or facebook.com/MRAFoundation. To register to become an organ donor, visit unos.org.
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