Meet Your Neighbors: Ashley & Aubrie Bring Awareness about CureARS with Heart and Hope

Due to the constant news briefs regarding COVID, other health challenges that occur in families may be swept under the radar inadvertently. A Raritan neighbor and dedicated Mom, Ashley is willing to share her personal story about her daughter Aubrie and the overall effects an illness may have on a family.   

CureARS is a registered 501(c)(3) non-profit organization founded in 2021. This organization was created by two families with the goal of saving their kids' lives. Daphne Magee (EARS2 mutation) and Aubrie Rowland (AARS2 mutation) are both young girls affected by the ARS gene family. Currently, there is no treatment and no cure for these conditions. Families are not given much hope for future treatment.

View the video here: https://www.youtube.com/watch?...

RN: How did you initially feel about the diagnosis, and what is the first thing you were determined to do?

Ashley: Initially, I went through a range of emotions. I didn’t just break down once, I kind of lost it over and over again. It’s like going through the stages of grief, but you are stuck in this endless cycle. I was about 5 months pregnant when we received her diagnosis, and we didn’t know if my son was affected because this is a genetic condition (thankfully we found out later he is not). I couldn’t sleep, I was worried, I was grieving the life I thought we would have and the life I thought my daughter would have. Before her diagnosis, I remember thinking how sad I will be when she is no longer a baby or something simple like going to college. The day of her diagnosis, I remember thinking, I was wrong, I want her to have those experiences. I was told only 20% of babies diagnosed with Mitochondrial Disease live past the age of 10. All I could think is, I want my baby to grow up. I hated that her life would now become about doctors’ appointments and her condition. I almost found myself wishing I didn’t know and that I could just go back to before. There’s a kind of bliss in that ignorance. Our entire world was turned upside down. They told me, she could slowly decline, end up in a wheelchair, end up bedridden, unable to speak, and eventually, it could be terminal. And I couldn’t get it out of my head. Aubrie is fiercely independent. She had a delay in walking, but she was always so determined, and I can’t tell you of a moment in my life where I was prouder than the day she started walking on her own. I can’t even imagine that being taken away from her.

Aubrie is a kid who has a love for life and adventure. She wakes up every morning and tells me, “mom, it’s time for a beautiful day”. She is also sassy and thinks she is in charge. She doesn’t know she is sick and most people who meet Aubrie do not immediately know something is wrong. She’s smart and funny. She loves with her whole heart. The only thing that kept me going was HOPE. I decided quickly as much as it kills me to accept her diagnosis, I was going to find a way to save Aubrie, as insane as that sounds. I went on a mission to learn as much as I possibly could. Because knowledge is power. However, at first every single time I started to read a research article it took me several hours to several days because I couldn’t stop crying. I almost had to separate myself and pretend this isn’t my kid who has this condition. I had to face it head-on because ignoring it doesn’t help Aubrie. Her neurologist told me there was nothing she could do, and to take her home and enjoy our time with her. I didn’t accept that and sadly this is what many families are told when there is a child with a rare disease, simply because they do not understand the condition. I found hope in the fact that there are potential treatments and potential CURES. That these treatments may already exist. The problem is there is no money for research into her condition. To have access to these treatments, we need more research. That is where my journey began.

RN: How do you hope your organization helps families by knowing your story?

Ashley: I hope my story inspires other families. Many families are told there is no hope and it’s hard to see the light at the end of the tunnel when you get this type of diagnosis. I want to bring families hope, I want to teach families how to advocate for their loved ones and I want families to be able to find their purpose in being part of the solution. Families can get involved and help find a treatment or a cure for their loved ones. When you get this diagnosis, it’s easy to get lost and it’s easy to shut down. For me, co-founding my nonprofit, CureARS has given me a purpose and a way to fight for Aubrie. I hope it can be that for other families. I can’t sit and watch her get worse. I need to know that I am doing everything in my power to save her and others like her.

RN: What was the feedback from your family and friends when you started the non-profit?

Ashley: I’m blessed to have the family and friends that I have. My family was as determined as me and wanted to help with the nonprofit. I have family and friends on our board who volunteered their time. Aubrie is like a beacon of hope and everyone wants to fight for her. I think for some people it was hard to understand Aubrie’s condition. Mitochondrial disease is a very complicated condition and if you see Aubrie, it’s not something immediately obvious. I think all our efforts in spreading awareness and educating others have helped my family and friends understand and become advocates themselves. Seeing the support from family and friends has been humbling and I think Aubrie feels that love also.

RN: What advice would you give a parent of a child that has a life-threatening illness?

Ashley: My biggest advice is never to give up hope and fight for your loved ones because they deserve someone fighting for them. As hard as it may be, learn as much as you possibly can, connect with others who are going through the same situation, and make sure you are equipped to advocate for your loved one. I always say I learn more from other moms than any doctor I have ever spoken with. Mom’s are better than FBI detectives when it comes to finding answers for their kids. The doctors do not always know the answers, especially when you are dealing with a rare condition, so ask questions, push for answers, and if you are not sure get another opinion. If a doctor tells you there is no hope, get another doctor who will fight for your loved one with you. Trust your gut instincts and allow others to help because sometimes you need time for you too.

RN: How do you keep yourself centered and stay calm even during difficult times?

Ashley: Aubrie & my son, Archer help keep me centered and calm. I can’t fall apart while I still have two kids to care for. What helps me is watching her and my son play, getting all the cuddles I can, and watching them grow. There are moments where I do fall apart. Every single MRI, EEG, other tests, doctors’ appointment, I get nervous, because I’m afraid they will find something. Every single illness Aubrie gets I’m on the verge of falling apart. A cold can put Aubrie in the hospital. I have channeled some of that energy into my nonprofit. It gives me a sense of control over the situation in the form of hope. I live for that feeling of hope because without hope I would fall apart.

If you'd like to donate or support this organization you may visit their website: WHO WE ARE | CureARS  Learn more about other families affected:MEET ARS HEROES | CureARS

Follow their experiences and connect with them on social media:Cure ARS | Facebook

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