About Us

About Rhizo Kids Ohio

Rhizomelic Chondrodysplasia Punctata (RCDP) is an autosomal recessive condition, meaning it can affect both males and females, regardless of family history. For a child to inherit this disorder, both parents must carry the recessive gene. Currently, fewer than 100 children worldwide are living with this rare and devastating condition.

Tragically, most children with RCDP do not survive beyond the age of 5, and only a few reach their teenage years. The condition is characterized by significant challenges, including shortened limbs, bone and cartilage abnormalities, seizures, distinctive facial features, severe intellectual disabilities, profound delays in psychomotor development, and cataracts.

Due to its rarity, research funding for RCDP is extremely limited, and only a handful of dedicated doctors worldwide are working to combat this disease. Our organization is committed to raising critical funds for research and spreading awareness about RCDP. Together, we can bring hope to affected families and work toward ending this heartbreaking condition. Your support is invaluable—every contribution brings us closer to a cure

A Letter From The President:

In 2002, when my son Jake was diagnosed with Rhizomelic Chondrodysplasia Punctata (RCDP), a terminal genetic disorder, we found ourselves without anyone to turn to for support.

Jake was given a prognosis of just two years to live—a reality we refused to accept. Determined to find answers, we explored every possible avenue and were fortunate to connect with Dr. Nancy Braverman, who helped us understand more about RCDP and offered invaluable guidance. Then in 2005, our journey became even more personal when our daughter Jordyn was also diagnosed with the same rare condition.

Today, I am grateful to say that we have built a close-knit community of families who walk the same path. As a Rhizo family, we share knowledge, provide support, and comfort one another during our darkest days—days we never imagined we would face. Together, we are united in our mission to find a cure for our children.

Every year, we tragically lose children to this rare genetic disorder, but our determination to fight on never wavers. As of 2025, there are now approximately 100 known cases of RCDP worldwide. While many people may never discover their life’s purpose, I found mine the day Jake was diagnosed. In that moment, I realized my calling was to be an advocate and fight for my children's lives.

Each day is a battle to advance research and find a cure, and every new day with our children is a blessing we never take for granted.

Mindy Lee

President | Rhizo Kids Ohio

Mission Statement

RhizoKids Ohio is a local chapter of RhizoKids International, established by families of children affected by Rhizomelic Chondrodysplasia Punctata (RCDP).

In December 2008, RhizoKids Ohio became a recognized 501(c)(3) nonprofit organization, dedicated to raising awareness about RCDP and supporting critical research efforts.

Through generous donations and annual fundraising events, our mission is to fund research to find a cure for this rare and terminal condition, bringing hope to affected families worldwide.