North Royalton High School graduation is always a very special occasion, Families watch their graduates make their way proudly across the stage as their names are called. High school is over and a whole new part of their lives is opening; that is why they call it commencement. Commencement means at the beginning. It asks the question, “What next?” As the names were called of each graduate to come forward to receive their diplomas, two moms, themselves both graduates of Brecksville Broadview Heights High School ’89, asked themselves, “What Next? What will be in store for their own sons receiving their diplomas on June 3. For two families, it was an evening that held an extra special meaning.
Mindy Lee and Jen Dumm sat near each other as the names of the seniors, were read. Each mom has supported the other in their journeys to this moment.
Jen’s son, John Owen Dumm, was diagnosed as a preschooler with Duchenne’s Muscular Dystrophy, a disease that affects mostly boys. It weakens and eventually destroys the muscles. Every day is an adventure for John as he and his family and friends look forward to a medical cure for this genetic disorder. Seated in his motorized wheelchair, John accepted his honors diploma.
John Owen’s Adventure Inc. (JOA) is dedicated to discovering a treatment, improving research and establishing education and awareness programs about DMD for all individuals who are affected by this disease. JOA is also committed to raising awareness and research dollars to treat juvenile diabetes, a chronic disease affecting nearly 26 million Americans.
JOA’s annual Picnic in the Park will be held on July 9, from 5 – 10 p.m. at German Central, 7863 York Road in Parma. This is a free event. For more information, visit www.joainc.org.
Mindy Lee’s son, Jacob Jeffery Cirner, was also in a wheelchair pushed by one of his teachers, Sharon Merritt, to receive his diploma for his own course of study. Jake has Rhizomelic Chondrodysplasia Punctata (RCDP), a fatal form of dwarfism; a genetic condition that shortens his limbs, affects his lungs, causes cataracts, and causes painful joints. Jake cannot walk, Jake cannot talk, Jake cannot eat normally and is fed by a tube. Jake is 20 years old and has outlived most expectations by over fifteen years. Every day is a fight and a gift. Mindy recounted some of the thoughts that went through her mind at graduation.
“I don’t have the expectations other parents do when they think about their kids going to college or getting a job and later on having a life of their own. I have learned to be thankful for every little miracle. Graduation itself is a miracle and I can’t say enough about the North Royalton School system and what they have done for Jake and are doing for his sister Jordyn, who also has RCDP. Every week they have received physical therapy, occupational therapy, and music therapy. Jake loves music and Carrie Underwood. Mayor Larry Antoskiewicz has also been so very supportive. When he became mayor, he invited my husband, Doug Lee, and me to his inaugural ball as his guests. On the program, it stated that any proceeds would be donated to RhizoKids Ohio, part of the worldwide network of Rhizo Kids International. I just can’t say enough about North Royalton and its people. I can’t think of a better place on this earth to live.”
Jake and Jordyn are physically and medically fragile which means there is a lot of cleaning and sanitizing that has always been done way before everyone did it for COVID. They are considered long term survivors living past the age of 5. They need to travel for treatments. Now that both youngsters are physically larger it is harder to transport them in car seats in the Honda Odyssey that is also showing its age. They need larger transport chairs that can be moved safely. “We have looked at larger stroller type chairs, but it is still something to consider securing two strollers in a van.” Traveling with Jake and Jordyn has other challenges beside just the car seats. Rest stops are not equipped to handle special needs adults in diapers. RhizoKids is working on a letter to Secretary of Transportation Pete Buttigieg to put before congress measures that would make “handicap accessible” to really mean accessible to all special needs individuals, kids and adults, and their families and caregivers.
Jake and Jordyn are participating in “Natural History Studies” of the disease. Natural History in this case means what forms the disease takes and how the disease progresses. A.I. Dupont Hospital for Children in Delaware, is compiling this information to help develop treatments for RCDP. The condition is so rare, there are only about 100 cases of it in North America. There was very little incentive to develop any drug or treatment that stimulates or increases the body’s production of plasmalogen, a molecule that is in each cell of the body. Rhizo kids have very low levels of plasmalogen and that is a major cause of the problem. Fortunately, that is changing. There is strong new research being done at Med-Life Discoveries LP in Saskatoon, Saskatchewan (https://med-life.ca), on Novel Synthetic Plasmalogens and Plasmalogen Precursors as treatments for Alzheimer’s and Parkinson’s diseases, Multiple Sclerosis, and some Peroxisomal Biogenesis disorders. That is good news.
The Cirner children are part of RhizoKids Ohio, a sister organization to RhizoKids International, that shares research, information, awareness and encouragement to patients and families worldwide. RhizoKids Ohio, a 501 (c) (3) charity, has raised thousands of dollars through the years for awareness and research. RhizoKids Ohio needs your help. This year the annual Night at the Races event is being held on Saturday, October 8, at St. Adalbert Keller Center, 66 Adalbert Street, Berea, OH. Besides helping Jake and Jordyn Cirner, attendees will be helping Maddie’s family, near Columbus, and RhizoKids International. To learn more about this condition go to www.rhizokidsohio.com , or Contact Mindy Lee: Mindylee1962@gmail.com for more information and to help where you can. Mindy says it again, “we are blessed by the outpouring of love by the community in which we are proud to reside.”
Jake and Jordyn have a Facebook page with 20 thousand followers, follow them at: Life Lessons with Jake & Jordyn.
Congratulations to Jake, John Owen and their fellow graduates!
By LINDA KWARCIANY
Contributing Writer
