Carter’s Story: Empowering Families to Support Kids

Dr. Ascadi said all were possible. Then, he said something that really made an impact on Carter’s parents. “In not so many words, he said to stop focusing on the lifespan and focus on the life,” says Ashley. “Live life, take trips, get sick, get well again and find joy. I couldn’t hold the tears back and I also couldn’t hold myself back from hugging him as we were so grateful for this news.”

“I have her as an ally.”

Since the diagnosis, Carter has seen numerous specialists at Connecticut Children’s. In addition to Dr. Ascadi, they have met with a neurosurgeon, a cardiologist, a gastroenterologist, an orthopedic surgeon, an occupational therapist and a physical therapist.

Managing Carter’s diagnosis has been a challenge – from keeping track of appointments to finding and paying for the expensive equipment that will ensure he has every opportunity to thrive at home.

Early on, Connecticut Children’s case management team recognized the hardships the family would likely face as a result of Carter’s diagnosis. When Carter was just 3 weeks old, case management connected the family with another critical support – Rachelle Tirrell, BSN, RN, a nurse clinical care coordinator with Connecticut Children’s Center for Care Coordination who is able to help them navigate complex child serving systems and insurance barriers to better support their son.

“One of the things I love about working with the Chella family is the engagement and enthusiasm they have each step of the way,” says Rachelle. “We work together to accomplish goals as a team and they are always willing to share photos and videos to thank those who have had a part. Those little smiles make my day.”

Rachelle has helped the family find funding for two Tumble Forms chairs to help Carter sit up and play, an Explorer Mini motorized chair that helps him move around and keep up with his brother, and a special toilet seating system. Without Rachelle’s help, those items would have cost the family thousands of dollars, as insurance does not cover them.

“Rachelle has come through on so much funding and support that it has greatly helped to ease our burden,” says Ashley. “If she doesn’t have an answer, she finds something to provide me, even if it is an understanding ear. If it’s been a while since we’ve touched base, she will reach out and inquire as to how we are doing. I cannot explain how comforted I feel knowing that I have her as an ally. She has been an absolute angel.”

Rachelle is helping the family appeal to their insurance carrier to cover a manual wheelchair for Carter. She also joined the family for a meeting with the Connecticut Office of the Healthcare Advocate and the Connecticut Office of the Child Advocate to discuss insurance support. She has also helped them to get on the wait list for the Katie Beckett Medicaid Waiver Program since they are struggling to pay for Carter’s care and equipment but are unable to qualify for Medicaid without the waiver.

“Care coordination involves learning new things every day and being able to share what I’ve learned to make someone else’s life better,” says Rachelle. “Each day, I experience conversations with families that motivate me to keep giving my all to each and every family I talk with.”

“Part of our family.”

While they continue to navigate the challenges that accompany Carter’s diagnosis, Ashley Burkman and Matt Chella remain grateful for all of the support they have received from physicians, nurses, occupational therapists, physical therapists, sonographers, x-ray technicians, certified nursing assistants, schedulers and others at Connecticut Children’s.

“I feel like Connecticut Children’s and their team members are part of our family, because they truly are.” says Ashley.

The family is committed to raising awareness about Carter’s condition and looks forward to advocating for other families that have children with disabilities. They have also participated in two research studies related to LAMA2-CMD and plan to participate in further studies in the future.

And, most importantly, they plan to do it all while continuing to find joy in their journey.