Ashley Burkman and her husband, Matt Chella, were thrilled to welcome their sons Calvin and Carter into the world in May 2019. The pregnancy showed no signs of anything abnormal for the twins. However, shortly after the boys’ birth at 38 weeks, Carter’s parents and doctors became concerned about his health.

Ashley and Matt noticed that Carter was not thriving in the same way his twin brother was. They brought Carter to Connecticut Children’s, where doctors admitted him for an evaluation. After many tests, Carter was diagnosed with Laminin Alpha-2 Congenital Muscular Dystrophy (LAMA2-CMD). The condition affects 1 to 4 people out of every 100,000 and causes weakness and atrophy of muscles used for movement.

After learning Carter’s diagnosis, the family connected with an extensive array of medical specialists at Connecticut Children’s. They also connected 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 Carter.

“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.”

Click here to read Carter’s full story and learn more about his diagnosis and the medical care and care coordination services he’s receiving at Connecticut Children’s.

Read additional articles on the Advancing Kids Blog about care coordination.