- The disorder, which affects the cellular transport of copper, is associated with seizures, stunted growth, failure to thrive, unstable body temperature and intellectual disability, according to the National Organization for Rare Disorders.
- Infants diagnosed with Menkes disease usually have a life expectancy not exceeding three years.
- In his search for solutions to treat his son, Xu came across an experimental treatment for the disease in the U.S.
- At the time, Cyprium Therapeutics and its licensing partner Sentynl Therapeutics were at phase one of clinical trials with CUTX-10, a copper histidine treatment for Menkes disease.
- Having no access to the copper injections or alternatives left Xu with no choice but to find a way to develop a similar treatment on his own.
A daily dose of Asian America's essential stories, in under 5 minutes.
Get our collection of Asian America's most essential stories to your inbox daily for free.
Unsure? Check out our Newsletter Archive.
- “Sometimes the translations did not make sense and I would check everything word-by-word,” Xu said. “It was complicated, but there were always some clues online.”
- He found that creating the copper histidine treatment involves mixing water with copper chloride dihydrate, L-histidine and sodium hydroxide.
- By taking the courses, Xu will be able to apply the correct quality control in the pharmaceutical drugs that he will eventually create.
- Xu first approached a company to produce the experimental drug at its industrial plant using the research. The medicine was successfully made, proving that the concept has potential.
- After testing the copper histidine on rabbits and himself, he felt confident that it was ready for his son.
- Still, Xu started Haoyang with small dosages, eventually working up to the standard dosage.
- Xu then brought his son to the hospital for a check-up to make sure the treatment did not do any damage to the boy’s liver or kidneys.
- Xu also went on to develop another drug, called elesclomol, which some studies suggested can also help treat Menkes disease.
- His son, now aged two, remains unable to speak nor roll over on his own and can only consume liquid food.