Branson family shares journey with son’s rare disease

Have you heard of Multicentric Carpotarsal Osteolysis Syndrome, or MCTO? If not, that’s not surprising, because only approximately 60 people have been diagnosed with this disease since it was discovered/identified in 1964. Also known as idiopathic multicentric osteolysis with nephropathy, it is characterized by carpal-tarsal destruction and kidney failure. 

Justice (Photo submitted by Jordan and Leah Pingleton)

In more accessible terms, this generally means the wrist and ankle joints deteriorate over time due to the carpal and tarsal bones completely dissolving, leaving the person disabled and dependent on a wheelchair. Even more serious, however, is the potential for kidney and other organ damage as the bone materials break down and don't process, meaning transplants are likely at some point. Hearing, eyesight, sleep cycle and more can be affected, with a maximum life expectancy of mid-life. 

To bring knowledge of MCTO even closer to home, meet Jordan and Leah Pingleton of Branson and their son, Justice, who was diagnosed with the disease in 2023 at age four. During February, designated as Rare Disease Month, Leah Pingleton reached out to area friends to explain more about Justice’s condition and ask for prayer, and also agreed to share their story with the Globe. It is our hope that even more people will begin praying for their family, and that other families navigating the difficult journey of a child’s illness will find comfort knowing they are not alone. 

Life for Justice is a day-by-day journey. He has many appointments with a variety of doctors, often necessitating travel to Children’s Mercy in Kansas City (the same hospital where Jordan was treated for childhood leukemia) or other specialty centers, and he deals with pain and discomfort on a regular basis. Nearly every day involves asking his parents to rub his feet, carry him as he tires easily, and help him pick up things as he cannot grip well. There are also regular meetings with an orthotics specialist to keep leg braces properly fitted as Justice grows; the family is thankful for Transcend Orthotics and Prosthetics and their understanding help. Frequent blood work and lab testing is another challenge, not only for Justice as he endures the needle pokes and having to sit still during prep work, but also for his parents as they helplessly watch his discomfort and anxiously await each set of results. 

During the first year after diagnosis, Justice and his parents learned from his nephrologist that he has renal dysplasia as part of the disease, meaning his kidneys are undersized and the transplant will likely be sooner than later. Both Jordan and Leah plan to be tested for a match, with other family members willing to be considered if necessary. 

“My momma heart was touched when both of our older children said they would gladly give their little brother a kidney,” said Leah. Their love and generosity, though, makes it even harder for her and Jordan when it is hard to be as supportive as they would like for the other children’s needs, activities and accomplishments, including daughter Gabby’s recent advancement to the national level of Youth Fine Arts competition in the Assemblies of God. 

Leah has been transparent with friends and family, in person and on the special Facebook page for those who wish to follow Justice’s journey, as she asks for prayer. On a recent morning, she shared that she teared up while helping her son get his braces on and get ready for school, as he said to her, “Mom, I just hurt so bad.” 

“Watching your child suffer is hell,” said Leah. “Some people have no idea how much pain he endures every single day. While we are trusting God for a miracle, we are often physically and emotionally exhausted.” Daily life involves routines like helping in the bathroom and cleaning up spills that result from poor grip—not to mention the daily interaction needed for four other children: Jonathan (17), Gabriella (16), Chloe (10), and Jackson (7), plus Jordan working hard at his job to provide for his family’s needs and the extra financial challenges of frequent travel to out-of-area appointments. “We know we have an army of faithful friends praying for Justice,” said Leah, “but we as parents can use prayers, too.” 

Justice’s most recent challenge arose in March, when he began experiencing reduced vision and his parents noticed a cloudy appearance in his eyes. A phone consultation with his doctors raised concerns about calcium deposits in his eyes from continued breakdown of bone tissue, leading to a trip to a Kansas City pediatric ophthalmologist to formulate a treatment plan, which may include double corneal transplants. The specialist stated they'd never encountered the type of structures they're seeing in his eyes before, necessitating further research to attempt to stave off blindness. More appointments are coming up through May and June for that situation, as well as rheumatology and regular pain management treatment and labs; and the Pingletons appreciate continued prayer as they juggle time off work, finances and end-of-school-year activities.  

In spite of it all, the Pingletons are firm in their trust and faith in God. “It’s okay to feel the emotions,” shared Leah. “Just don’t let them dictate your mindset. I have to trust God because He loves Justice even more than I do. We are going through a hard time, but I know Who holds my future.” 

If you want to follow Justice’s story, you can join the Facebook page “Justice’s Journey” and ally with their church congregation through prayer and support at Grace Community Assembly in Branson, MO. 

To bless the family directly, you can support them via Venmo at @LeahPingleton, or CashApp @LadyLeahPingleton, and a GoFundMe link is available also on the Facebook page. 

Justice will celebrate his sixth birthday on May 22. If you would like to send him a birthday wish, feel free to contact his parents. 

The family is grateful for all the prayers, love and support you can give during this time, and spreading awareness of MCTO!