How did this happen? Why? Now what do we do?
In college, a professor described it to me as “What, so what, now what?” Identify it, think through how it makes you feel, and then figure out a path forward.
Seems like as good a way as any, but sometimes, the “what” is so heavy, so unbelievable, so tragic that you can’t get past the “so what” and the heartbreak in it all. The “now what” is elusive.
When you hear Aubrey and her family’s story, you might understand what we mean by that.
Her parents, Marcus and Allison, both have a history of service in the Air Force. Marcus works in intelligence and recently hit 18 years of service. Allison was a journalist for about eight years before a tour in Iraq prematurely ended her career.
“We were stationed in Iraq in 2009 next to a burn pit,” she explained. “It’s coming to light more now, but we didn’t realize how dangerous it was at the time. It caused a myriad of diagnoses for me, including asthma, and I could no longer serve.”
Allison became a disabled Veteran of the Air Force, and while she was disappointed that her time in service was over, she was excited to start a family. She and Marcus welcomed their first son, Brandon, in 2014. Next came Zachary (now age 6) and finally, a little girl they named Aubrey.
They settled into their dream home in San Antonio, and life, for a little while, was good. Really good.
“But one morning, Aubrey woke up with a limp,” Allison told us. “She was about 2 ½ years old at the time and completely typical. We didn’t think much of it initially, but it didn’t go away.
“We took her to the doctor, and they wanted us to go to a neurologist. That was in March. We were concerned but still not overly worried. Then on Easter Sunday, we were playing ‘head, shoulders, knees, and toes,’ and she couldn’t put her left arm up. She reached over with her right hand to pull her arm up. She didn’t even realize anything was wrong. She just noticed her arm didn’t go up, so she used her other one to lift it.
“Marcus and I just looked at each other and said, ‘Something is wrong, and we need to go to the ER now.’”
When they got to the hospital, the medical staff ran many tests. Initially, they said it might be tethered cord syndrome and that she would have a quick operation. Then another doctor came in the room and said, “No, that’s not what it is. The resident shouldn’t have told you that. We think it’s muscular dystrophy. Try not to be too alarmed because Aubrey is a girl, so it won’t be Duchenne muscular dystrophy (DMD), which is the worst one.”
Aubrey endured steroid treatments, chemo shots, and IVIG infusions all in an attempt to slow whatever was causing the muscle weakness while they waited for the final answer. The months of steroids resulted in a 10-pound weight gain on a tiny body, mood swings, and a lowered immune system.
Unfortunately, when the final test results came back, it confirmed that it was not muscular dystrophy, but something far worse than DMD.
Aubrey was diagnosed with an ultra-rare neuromuscular genetic disease called Reducing Body Myopathy (RBM).
“We know of two others in the world who currently have it,” Allison told us. “One is in Italy, and the other is in South America. Two others have passed away. And then there’s Aubrey.”
Genetics came back with four mutations. Three of Aubrey’s mutations were rare forms of muscular dystrophy – the fourth was RBM.
“The first thing we saw after getting her diagnosis is that the average prognosis is age five,” Allison quietly told us.
Aubrey turned five this year.
(Donate RIGHT HERE.)
The disease is horrific and relentless in its progression, and there is no known treatment or cure. Aubrey first experienced symptoms in March; by December of that same year, she could no longer stand.
“It took just nine months, and she lost all of her mobility,” said Allison.
“One time, she fell in the kitchen – she wasn’t even three years old yet – and she started crying and said, ‘I can’t get back up.’ She was just so frustrated and sad. That broke me.”
“It’s been hard to tell her brothers and try to explain what’s going on,” Allison continued. “But with Aubrey…What do you tell a three-year-old when her body stops working?”
One small relief came from the Air Force. While the family was so sad to leave their dream home in San Antonio, they quickly realized the 13 steps to the front door wouldn’t be possible for Aubrey now. They would need to move.
“The Air Force leadership has been so awesome and understanding,” Allison told us. “We received a humanitarian reassignment to Scott Air Force Base and are closer to family.”
But still, the last two years have been, in a word, unfathomable.
So much has changed so quickly, but Aubrey’s vibrant personality has only gotten stronger.
She is the funniest one in the family with a huge personality and great sense of humor. She loves giving hugs and kisses and cracking everyone up with her latest joke. She also really likes playing Roblox with her brothers, and it’s a great way for her to remain connected to them with something they liked to do before her diagnosis.
A close second would be her emotional support dog, Teddy. She got him through the Make-A-Wish Foundation so she could have someone to cuddle and sit with in her wheelchair.
Honestly, animals in general are kind of her thing. Even they probably think she’s hilarious.
The family has been through it, that much is clear. They jumped in head first and intensely advocated for their daughter, ensuring she had every opportunity possible, despite their being no treatment or cure to this horrible disease.
“But the one thing that we can't provide her that we desperately need is a wheelchair-accessible vehicle,” Allison shared. “We have been getting by with getting Aubrey to her medical appointments by carrying Aubrey to and from our car and loading her into an adaptive car seat.
Now, that no longer provides the necessary postural support for her. It is unsafe for her to ride in a vehicle without being in her power wheelchair and we can't continue to stretch this mode of transportation out any longer.
“This time last year we had no idea just how quickly she would lose her mobility and we were not prepared to need this necessity so soon. We are in desperate need of a safe and dependable wheelchair-accessible vehicle that can accommodate a large family of 5, seating for a nurse and a support animal, and Aubrey's additional medical equipment.”
Simply put, they want to give her the opportunity to experience life outside of their home again.
Through the generous support of our donors, we were able to help bring that dream to life by supporting the family with $50,000 in impact to purchase a 2022 Chrysler Pacifica ADA van.
Now, Aubrey has the chance to share more of that big, vibrant personality with more of the world. And we could all use more of that.
Through all of the heartache, all of the wishing we could change things, all of the whats, so whats, and now whats, there’s beauty in this story. Because Aubrey is part of it. Because another life was changed for the better. Because helping the people who need it most is the most selfless thing we can do.
What: a little girl with one of the rarest diseases in the world needed some extra support.
So what: a community of selfless donors stepped in to make that dream a reality. Now what: Her story can inspire more to donate and help so many others like her.
If you were part of making this grant happen, we don’t have the words to thank you. Just know it makes all the difference…just know it means everything. Thank you for being part of it. Donate today as a one-time or monthly donor and help us change more lives, one day at a time. DONATE HERE.