July 2022 Special Needs Living Akron/Canton

Luke Musgrave And His Wonderful Family

Family Spotlight By Andrea Hurr

“There is always something to be thankful for!” This is the motto of Kim Musgrave, mother to Luke (age 24), who has cerebral palsy, epilepsy, and mitochondrial disease. What an amazing outlook on a life that some might view as super challenging, exhausting, maybe even sad, but spend a bit of time talking with her, and you become captivated by her grateful heart and grace.

Luke’s life has been a journey filled with many, often lengthy hospitalizations, surgeries, therapies, and even a medically induced coma. There was a time when Luke had a very scary decline, and his family feared they may lose him. He is truly a miracle, though, and always fights his way back. Luke uses a wheelchair most of the time but can and does walk with assistance. He receives most of his nutrition through a g-tube but occasionally eats food that has been pureed. Since Luke is non-verbal, his family was able to help him obtain an iPad to use as a communication device. Currently, Luke is learning to use an eye-gaze device to help him communicate even better! His mom and dad dote on him, saying that he is “one amazing, inspiring young man and our miracle child.” He has overcome so many challenges, and through it all, he continues to smile and never complains. We could ALL learn a lot from Luke.

I’d really like to take a minute to talk about Luke’s family. He has an older brother CJ, who is described to me as just the best big brother anyone could have; his father, Cliff, is a fireman and another inspiring individual. Then there is Kim, his mother, who has spent Luke’s entire life fighting for him. From getting doctors to address her concerns when he was young, to finding the right Doctors who ran the right tests to come up with his diagnoses and treatment plans, to fighting for his rights and needs at school, where she was met with a lot of resistance to what she knew her son needed. I could go on and on. Her big initiatives right now are spreading the word to anyone who will listen about entering the home health care field, where our entire country is amid a provider crisis.

Kim is lucky enough to have approval for Luke to receive 54 hours a week of nursing care; however, they only have coverage for around 18-24 hours/week. The nurses who care for Luke are like family to the Musgraves and really help change their lives for the better. Kim feels that if they had more coverage for nursing care available for Luke, it would give her more time to advocate for not only Luke but other special needs families as well. Kim says that she tries to help as many other moms and families of special needs kids as she possibly can. She currently volunteers her time on several committees: Transition Committee at Akron Children’s Hospital, Parent Advisory Council at Akron Children’s Hospital, and Ohio Nursing Collaboration. They have found a great resource with The Chapel Church in Green, too. Amy Troyer heads up the special needs department, and she runs a wonderful program each week and often holds events that are all-inclusive, which Luke just loves.

It’s hard to end this story on the Musgraves as they are truly such a remarkable and inspirational family, but I will end with a quote from Kim, “Every little step forward is a celebration. Don’t focus on what your child can’t do; keep the focus on what they CAN do!” Oh, and it helps to have a strong faith in God to help you through, too.

Several organizations have been helpful to them through Luke’s journey:

• Family to Family is a wonderful advocacy organization.

• Arc of Ohio

• DRO (Disability Rights Ohio) is very helpful with significant legal issues.

• The County Board of Developmental Disabilities can help with locating resources.

• Akron Children’s Hospital — Kim says they have been the most amazing resource for them. She says they are phenomenal.

• Palliative care is helpful for children and families that have complex health issues and needs.