SAN ANTONIO – Marcus and Allison O’Sullivan are a young military couple with three children -- 8-year-old Brandon, 5-year-old Zack, and 3-year-old Aubrey.
Like many others, life was seemingly normal for the O’Sullivan family as they hunkered down at home during the brunt of the COVID-19 pandemic and homeschooled their two boys.
However, Aubrey’s health took a sudden and unexpected turn. The couple says before November of 2020 Aubrey was able to run, jump and play, but soon they noticed something was wrong.
“We started noticing like, she was a little slower when you go to pick her up. She felt a little limp, but I thought it was just her playing,” said Marcus.
Concerned for her development, Marcus and Allison took Aubrey to a neurologist. This came after numerous visits to their primary care doctor and several MRIs and misdiagnosis.
“During that time, we had blood work done and the genetics came back with a match for something called a ‘reducing body myopathy,’” said Marcus.
A diagnosis that’s offered little to no hope for Aubrey and a hard one for Allison to accept.
“We were told that it’s progressive, rapidly so in children and that there’s not a treatment or cure. They told us to take our daughter home and just enjoy her and it’s just been, it’s been really hard to do...to sit with that,” said Allison.
Aubrey has already lost the ability to stand on her own and soon doctors say it will be hard for her to breathe. Allison says respiratory failure is usually the cause of death for the disease.
For the O’Sullivan’s, the clock is ticking and their time with Aubrey is now more precious than ever.
“All I know is I cherish every minute that I have with her. I’m just trying to make the best of the time that we do have because I don’t know how much I have,” said Marcus.
Because there is no treatment or cure, the family has created the Cure Reduced Body Myopathy Foundation. It’s a foundation aimed at raising funds and awareness in hopes of finding a timely treatment for Aubrey but also to fund research that can provide a cure for this crippling and heartbreaking disease.
To learn more of Aubrey’s journey, you can visit ‘Aubrey Strong: Aubrey’s fight against Reducing Body Myopathy’ on Facebook and or visit www.curereducingbodymyopathy.com