Sara Banghart is a single mom of 2 kids ages 6 and 4. She had a heartbreaking experience her first pregnancy, finding out there was a problem with the baby at 18 weeks and he wouldn’t survive. She carried him 34 weeks and he lived only 1 day.
When she became pregnant again, she had another very difficult pregnancy with various issues. Nonetheless, she was grateful the day she delivered her daughter Raelyn who was perfectly healthy. Or at least that’s what it appeared. After getting home, Raelynn was not eating and sleeping way too much, an estimated 22.5 hours a day. After 8 weeks she had only gained 15oz since birth and Sara began asking questions of the doctors. After several false diagnoses, long days of testing and various doctors she was diagnosed. It was the Tuesday before Thanksgiving and they told Sara her 3 month old had Pompe, a very rare neuromuscular disease.
Luckily, a drug had been released just 5 years earlier that helps slow down the progression of Pompe and they began infusions for Raelyn immediately. A central line was put in her chest at 6 months, and a port in at 1 yr old for her enzyme infusions. This prevented her from crawling as a baby. As the disease impacts the muscles, Raelyn has also never walked. Sara is grateful for the early diagnosis, as only 1000 people in the US have been diagnosed with Pompe, and the disease is hard to diagnose. Having an early diagnosis enabled them to begin the enzyme infusions early, which is a blessing.
Sara had left her job to take care of Raelyn when she was diagnosed. When she was 1, Sara tried to work part-time, just 4 hours a week. It was important to her to just to get out of the house. But it only lasted a few months and she realized Raelyn needed her fulltime. Although she had been taught to work hard, and be independent, she had to fully let go of working outside of the home to care for Raelyn.
Raelyn is now 6 years old now. Sara says she is a trooper and an overcomer. Sara said “She goes non-stop, is spunky, wants to do everything, is positive and keeps me positive. There are sad times when she says things like I want to be a ballerina, but I know I can’t.” Sara says those times break her heart, but they never last too long. Overall, doctors say Raelynn is doing really well and Sara is grateful for that.
Being a mom of 2 young kids and one in a wheelchair is very demanding. Yet Sara still makes time to help her mother who was diagnosed with Anaplastic Thyroid Cancer in 2014, when Raelyn was 3 years old. Sara became her mom’s live-in caregiver for 3 months after her mom, Denise, had 4 surgeries and couldn’t move on her own.
As Denise healed, she was able to become more independent, needing Sara less during the day while her husband was at work. Today, Sara still helps her mom by cleaning her house weekly, taking her to doctor appointments and helping her run errands. Her mom is in a wheelchair because the cancer has deteriorated her bones. Running errands sometimes includes taking Denise in her manual wheelchair, putting Raelyn in Denise’s lap, and requiring her 4 year old Jaxsen to stay close since Sara has to push her mom and daughter in the wheelchair. When I asked, why not let one of your siblings or a home healthcare company take care of your mom, Sara said “ my mom is my best friend, my biggest supporter growing up, and I enjoy giving back and helping her because she has helped me so much.”
When I asked Denise about Sara, she said “Sara is an angel of a mom and I believe God picked her to be Raelyn’s mom because she would be the best parent for Raelynn. She is persistent in fighting for Raelyn’s needs, and does so without getting angry. I’m so proud of her and the mother she is.” Denise says Sara handles challenges and pressure well, although she gets a lot of headaches because of the stress. Nonetheless, Denise said she never complains and just keeps moving forward.
Being a caregiver can be overwhelming but it also has its benefits. Sara said “Taking care of my mom is fulfilling because she is in a situation where she is tired and in pain. It gives her a sense of relief to get out and simply feel the air on her face. So much independence has been taken from her, and I’m able to give her a little of it back. It’s the simple things others take for granted.” As for the sacrifices she makes to care for Raelyn, it’s fulfilling for Sara because of the baby she lost. Sara said “I now have this beautiful, smart, funny little girl and I get to be her mom. Even with her limitations, it’s fulfilling to stay home with her, do crafts and see her face light up as she laughs and plays.“
Sara’s advice to other caregiver parents: “Hug your kids, and try to remember you can’t control everything, so focus on the things you can. Research and learn. Don’t give up. Try to stay positive, even though it is difficult. Fight your hardest to make everything ok, and never give up. Give it everything you have. These are the cards you’ve been dealt. Never stop trying to provide them as much normalcy as possible. It means everything to them.”
A Quote Sara Lives by: “Strength grows in the moment you think you can’t go on, but you keep going anyway!” Thank you Sara for inspiring us with how you lovingly care for your family, your selflessness, and your persistence to keep fighting for the things that matter most.