This post is an essay written by Raul Ramirez, a former camp attendee from Carrie’s previous job working with youth with neuromuscular disorders.

By Raul Ramirez

VISALIA — For more than a decade, there was a woman who dedicated her time and commitment to advocating for families and children with muscular dystrophy all over the Central Valley. Carrie Danny held many roles and responsibilities in her time spent working with the Muscular Dystrophy Association and has met hundreds of families because of it.

Danny was introduced to a completely different world and perspective than she had ever known or knew existed. The amount of families that she has come into contact with and assisted have been instrumental in helping Danny come to terms with her own illness and the effect that it has on her family.

A proud mother of two girls with their own special needs and living with stage four breast cancer, Danny had to refocus and try to adapt to a situation that most would say is tragic. Though this is the case, she fights everyday to continue to enjoy her life and be the best mother that she can be. Understanding that there is no one standard or correct way to live is what keeps her going.

Danny was born in Visalia, and was raised by her single mother. It wasn’t until Danny made the decision to leave for college that the wheels in her head began to turn and has since lived all over California. Cities like Santa Barbara, Santa Monica, San Diego and Fresno have all been called home at one point or another. This has had a lotto do with the amount of families that Danny has come across and impacted throughout her life.

“I think we all grow up trying to fit in,” Danny said. “With MDA, I was meeting all these families that had no choice, but to do things very differently.”

Danny spent 12 years working for the Muscular Dystrophy Association where she began as a Health Care Service Coordinator and Camp Director. It was here where she began to meet families all around the valley that needed help communicating their needs. She would travel to different school districts all throughout the Central Valley attending meetings and helping parents communicate the needs of their child to board members.

The very first IEP meeting that Carrie ever attended was actually my own in Earlimart. She had not had any prior experience doing anything like this and admitted she’s grateful my mother Susanna was the first parent she ever worked with.

“Your mom was like ‘Listen up! You’re going to do this, this, and this. And I was just like ‘Yep!,’” Danny said. “I always do remember her and I think I just carried that energy all of the rest of the time.”

A 25-year-old when she started, Danny began directing MDA Summer Camp every year in June for children with different forms of Muscular Dystrophy. Danny’s husband Kevin has been fortunate enough to attend the camp as a counselor on several occasions and understands why the work that Carrie does is so important.

“Everything was set up for wheelchairs. Everything was ready to go”, Kevin said. “For an entire week you didn’t have to worry about that stuff and you got to hang out with a bunch of your friends, which was cool.”

Danny created a space where children with physical setbacks were able to participate in activities that they normally wouldn’t have the opportunity to. She knew how valuable it was for a child to create core memories and have experiences doing what most other people your age are doing and did her best to provide each and every camper with that feeling.

She has dedicated so much time and effort into helping others work around their physical ailments and figuring out what it is that they can do instead of what they can’t do. Navigating the world with a disability is an incredibly difficult way to live life no matter the circumstances. Nobody knows this better than Danny herself.

Danny was diagnosed with breast cancer in May of 2017. She didn’t begin chemotherapy sessions until 2018 and by that time, the cancer had already spread into her ribs, hips, skull, and throughout her spine. She also had to deal with the side effects of the chemotherapy and her medications that created a new slew of issues for her. The pain she went through during this time in her life was devastating. So much so, there were points in her life that she wasn’t even able to hold her own daughter as a baby.

“Literally every layer of me hurt," Danny said. “I was just a wreck. I lost a bunch of weight. I weighed like 90 pounds and I was just a mess.”

Regardless of this, she hasn’t taken no for an answer and has continued to live her life the way she sees fit. Danny gives credit to all the amazing families that she has worked with and helped for helping her as well. She admits that sometimes she feels that she has learned more from them than they have from her. Never would she have imagined that when working with so many children with different disabilities that she and both her daughters would one day have one herself at such a stage in her life.

It’s admirable to see just how much Danny has been able to change her approach to life now that hers has changed forever. A situation like this will take its toll on you no matter who you are and yet, she is still doing everything she can in her power to be the best mother she can be and provide for her two young girls in her own way.

“She has really done a great job at seeing ‘what can this teach me?’, or ‘what can I learn?’, and continues to keep going”, David Morin said. “I think she’d tell you she uses it as all a gift. How to become stronger and how to take care of herself.”

Morin is Danny’s best friend and official Death Doula. Danny and Morin met 13 years ago when he volunteered at the MDA Summer Camp.

“It was really cool to see her find her own groove and what works for her and her family and how to be a mom. For her family, for her kids, and to be present in their lives.”

The two became a lot closer around the time that Danny was suffering through some of the most difficult times of her life. They began to talk on a regular basis, even when Morin was living more than 200 miles away. It was here and then when he saw just how resilient Danny had become and it influenced his change in approach to discussions of mortality.

“My friendship with Carrie is a big catalyst in the direction for my life. Organically, and unintentionally,” Morin said. “I think she was one of the first people I talked about that so openly with all the time.”

“I probably wouldn’t be a Death Doula right now if it wasn’t for my friendship with Carrie.”

There’s no doubt that Carrie Danny has had a positive impact on the lives of the families and friends she has come in contact with over the years. Her loyalty and passion have always shown. It still shows now, in times where she realizes that she can’t do the same jobs that she did before because of her health. It’s why even though these are her current circumstances, she is still working and creating a non-profit to help others just like her.

Danny realized that self care during times of incredible duress was almost impossible. That’s why she and a few of her closest friends spearheaded the projectknown as RISE. Reimagining Inclusive Self Empowerment was created as a way for breast cancer patients to communicate, share their experiences with each other, and come to terms with their illness in healthy ways. Danny worked amazingly hard to create a program that was easy and accessible for patients that simply didn’t know where or how to go about a situation nobody ever wants to be in. Approaching issues head on has always been her style though.

It has been amazing to witness Danny’s journey up to this point. In an odd way it feels like a real full circle moment. She advocated on the behalf of others for many years while learning the most valuable lessons she would ever need. It’s truly beautiful how much good she has done for so many and how her attitude and outlook were shaped by the resilience of all of the children, mothers, fathers, siblings, aunts, uncles, and grandparents that did what they had to do to keep moving forward.

“I think being a part of all these people’s lives and being a positive impact, it’s been great. Never a dull moment,” her husband Kevin said. “You could tell with people, it meant a lot to them. I’m proud to see the positive impact that she’s making.”

Through the cancer, through covid, and through raising two girls with developmental learning disorders, ADHD, and anxiety, Danny keeps going. She won’t be defined by her illness, but by her heart.

“Why is this? This is it?,” Danny said. “It sucks, I know. It’s just, it’s my life and I want my life. I want to live it. Messed up as it is, I want it.”