Ohio mom notices her newborn son stopped growing at 4 months old. Then doctors uncover a rare diagnosis

Jessica Clifton-Enge and her family from Cincinnati, Ohio, had experienced two difficult pregnancies. But with her third child, Jessica finally had the “amazing” pregnancy she always yearned for. However, once their son James was born in December 2025, multiple complications followed, including a rare condition that prevented the infant from growing at a rate consistent with others at that stage.

Jessica told Newsweek that James’ health challenges started pretty early on. She said, “Shortly after birth, James was rushed to the NICU, where he stayed for 23 days because his glucose was severely low.” She went on to share that, at that point, James’ older sisters did not even know whether he was a boy or a girl.

At first, doctors informed Jessica that her son had been diagnosed with hyperinsulinism, which is a rare condition where the pancreas produces too much insulin. It can cause a person’s blood sugar to drop to dangerously low levels.

His kidneys weren’t working properly

The mother of three said it was her hope that he would eventually grow out of the condition. But soon, it was exactly that growth that became an issue. By April, four months after his birth, doctors noticed that James was not growing at the rate expected for babies his age. Tests soon followed. Jessica then revealed, “That’s when we discovered his kidneys weren’t working properly.”

She went on to say, “My husband and I went through genetic testing before having children, so we thought we knew what we had and didn’t have. The results were devastating.”

In addition to his earlier condition, James was also diagnosed with cystinosis. The rare genetic condition is said to affect only 1 in 200,000 children in the US. It is so rare that it is not even included in basic genetic testing, which was why neither Jessica nor her husband knew they were both carriers.

Symptoms of the condition include slow growth, vomiting, and sensitivity to light. If untreated, it can lead to kidney failure, blood in the urine, and even high blood pressure.

The mother of three added, “Right now, he’s losing phosphorus and potassium, so he’s on supplements to help with both of those,” she continued. “He’s also on a Vitamin D supplement to help his bones because this disease can make bones and muscles very weak and brittle.”

She went on to say that her family is still in the “grief stage” and that navigating the ups and downs has significantly strained them both emotionally and financially.

She’s spreading awareness

The disease has no cure. However, there is a potential treatment involving stem cell gene therapy that is still in the trial stage with the FDA. Jessica said she is trying to get her son on the list of possible trial patients before adding that, as things stand, she hopes to help her son avoid needing dozens of medications and possibly a kidney transplant somewhere down the line. That is not even considering the costs that will come alongside these treatments.

For now, she just wants to spread awareness through TikTok of cystinosis so that anyone else navigating this condition in their family does not feel alone.