Helpless doctors, parents studying and treating children themselves

In the mid-1990s, Ms Sharon Terry received a bad news. Her two young children with a hereditary disease called pseudoxanthoma elasticum (PXE). The disease is also known as Grönblad-Strandberg syndrome.

PXE is a slowly progressing disease, causing stiff connective tissue, wrinkled skin in the neck, under the arms, around the groin and behind the knee.

"My two beautiful children are increasingly devastated by a cure," Terry said.

The good news is that Terry's family has plenty of time. Her children are only 5 and 7 years old. It is quite long for children to reach 20 years old. This is the period when the PXE disease begins to have the most devastating effects. They will cause vision loss, severe aging and blood vessel insertion.

The bad news is that doctors and researchers at that time had very little information about PXE. Terry felt pain when doctors only took her baby's blood and then made vague conclusions.

Portrait of Sheron Terry, the great woman who embarked on her own research on curing a serious disease for her child.(Image source: Bloomberg).

Upon seeing the inability of scientists, the Terry family had a bold decision. She and her husband wanted to work on their own ways to solve their illnesses, even though neither of them had any scientific knowledge. Terry holds a master's degree in religious studies. Meanwhile, her husband is a manager at a commercial center.

"We decided that we had to learn about everything we could about this disease," Terry said.

The couple sought to persuade researchers at Harvard University to let them get seated in the teaching classes on genetic diseases.

Every night, these superhuman dads and mothers spend 6 hours working in the lab to collect blood and tissue samples, extract DNA and decode the genetic code. Besides, they also receive tutoring from midnight to dawn from university students to gain more knowledge. And after only a few years, Terry and her husband discovered the gene structure behind the PXE disease.

Finally, they built a diagnostic test process and sent all the data they studied online. They established an open fund run by Terry and named the Genetic Union Fund.

The genetic alliance fund has provided a lot of free support and diagnosis for families suffering from devastating genetic diseases.

Terry's children, now 27 and 29 years old, have access to many effective treatments thanks to their parents' dedication and non-profit sharing.

"This year we have found four different treatments that we think will be effective," Terry said. "These methods have worked on mice. We are looking for ways to do this." perform clinical trials on humans and hope that they can be widely applied in the future ".