Joanne’s grandson was two and a half years old when he was diagnosed with juvenile dermatomyositis. His parents had just moved their family to a new city, so his rash and sluggish symptoms were confusing to pinpoint amidst all the life changes. He was taken to the pediatrician but was told, “nothing seemed serious.” Joanne saw her grandson again a couple of months later when they returned home for a visit.
“My grandson was a shadow of his former self,” Joanne recalls. His symptoms were worse.
Thankfully, he had an appointment with a rheumatologist already scheduled during his visit. It was frightening for Joanne to witness her grandchild so ill. A few days later, her grandson returned home, and the rheumatologist immediately admitted him to the hospital. He started treatment. Just over a month later, Joanne went to visit. It took a long time, but his condition slowly improved.
He’s six now, and he wrapped up his IVIG treatments this past January.
Right before a local Walk Strong event near her home, Joanne happened upon the community of people dedicated to helping her grandchild. Through her diligent Google research, Joanne found Cure JM! Joanne’s daughter and son-in-law are still recovering from their family’s intense experience with JM so for the time being, Joanne represents their family in the Cure JM circle, and she passes along the highlights to her daughter.
“What gives me hope is hearing of others’ children who have done well.”
Each case and each family is different, but they can all share a source of inspiration: each other. Joanne is impressed with how the Cure JM community learns from each other, and she is excited to see the efforts Cure JM has created to improve her grandson’s quality of life and the excellence of care available.
“I feel like Cure JM is a bit of a family.”
She serves on multiple Cure JM councils. She started her involvement by writing thank you notes, then participated in the walk; last year, she got involved with Giving Tuesday and most recently got involved with the new Grandparent Council.
Joanne is also impressed by the scientific information Cure JM provides. She worked as a dietitian for many years and found the breadth of support available inspiring, whether medical, relational or about maintaining a healthy lifestyle. However, Joanne points ou that a grandparent is less likely to be brought into Cure JM because the community is most commonly networked through patients’ immediate families and their doctors. She hopes more grandparents can discover a connection with Cure JM for themselves and be able to directly participate in the united commitment to bettering their children and grandchildren’s lives.
Given the opportunity to share her wisdom and encouragement with families of grandparents new to JM, Joanne’s reminder is this: “If you ask the right questions, you can find the kind of support you need.”
Joanne’s second piece of advice is inspired by her own family: “the kid is as fearful as the parent is.” The knowledge and awareness of her grandson’s parents contributed to his ability to persevere. The difficulty of maintaining a courageous front is different for every family and parent, so you must give yourself space to recover and strengthen yourself while you are supporting your child.
Joanne has poured her kindness and support into the Cure JM community and will continue to do so. Her grandson just finished kindergarten. Equipped with sunscreen and a family that loves him dearly, his grandmother is confident he has a wonderful life ahead.