The Ninth Annual Rockin’ and Rollin’ for Rhizo Kids – Night at the Races, will be held September 23 to benefit RhizoKids Ohio.
When Jake Cirner was diagnosed with RCDP at six months old, his parents were devastated. Imagine being told your child will most likely not live to see his second birthday. There was nowhere to go but up so Jake’s, proud and determined parents founded RhizoKids Ohio. Their mission is to continue to educate others, plus raise awareness and money for research to help other children and families faced with this rare condition.
With all the challenges they face, 15-year-old Jake Cirner, and his 11-year-old sister, Jordyn, are beating the odds every single day. They both receive occupational and physical therapy, speech therapy, and music therapy through the North Royalton School System at their home. Jake and Jordyn throughout the years have undergone more surgeries than some adults endure in a lifetime. They are an inspiration and are teaching us to appreciate the little things in life that so many of us take for granted on a daily basis.
Rhizo is short for Rhizomelic Chondrodysplasia Punctata (RCDP), a genetic disorder that is a form of dwarfism caused by a recessive gene. ‘Rhizomelic’ means shortening of the bones closest to the body’s trunk. ‘Chondrodysplasia’ refers to malformation of the cartilage that makes bones grow and do the work that muscles need them to do. It is an extremely rare terminal metabolic genetic disorder. In addition to dwarfism, RCDP causes many disabilities, including developmental delays, seizures, cataracts, congenital heart disease, difficulty or inability to swallow, digestive difficulties, and limited range of motion. Most children do not live past the age of five. There are less than 100 known cases of RCDP worldwide; four of them are in Ohio.
RCDP is so rare that there is 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. Because there is so little research being done, RhizoKids Ohio needs your help.
RhizoKids Ohio, a 501(c) (3) charity, has raised about $100,000 through the years for awareness and research. This year’s Night at the Races event is being held at St. Adalbert Keller Center, 66 Adalbert Street, Berea, from 6 – 11 p.m. The evening includes, dinner, beer, wine, music, raffles, and races. Show up in your nifty-fifties attire and win a prize. The cost of the evening is $50 per person.
Besides helping Jake and Jordyn Crider through research, you will be helping two-year-old Charlie Martin of Sagamore Hills, and one-year-old Madelyn Grace Kirby of Hilliard, Ohio, who also face the daily challenges of being Rhizo Kids. RhizoKids Ohio is the sister organization to RhizoKids International that seeks to support the families of RhizoKids through communication and education for improved quality of life for their child. To learn more about this condition go to or on Facebook you can follow them on Life Lessons with Jake & Jordyn.
Come and have fun at the Ninth Annual Rockin’ and Rollin’ for RhizoKids – Night at the Races, Saturday, September 23, at St. Adalbert Keller Center, 66 Adalbert Street, Berea, from 6 – 11 p.m. Tickets and sponsorship information can be obtained from Mindy Lee 216-904-8270.
RhizoKids Ohio thanks the many super supporters and 2017 sponsors that have already come aboard: Antonio’s Pizza, DuBose International Energy, ArtPro Graphics, Goldsmith Jewelers, United Brotherhood of Carpenters Local #373 and Local # 435, MAI Capital Management, National Concrete Polishing, Orthotic Prosthetic, Channel 3, Grind-All Concrete Inc.,  and the Royalton Recorder. Mindy Lee said, “Every day new corporate sponsors are getting on board,” and she is very blessed by the outpouring of love by the community in which she is proud to reside.

Contributing Writer