A few days after Jason and Tara Borofka celebrated the arrival of their first ƄeƄé, Jason, they had to face some of the toughest news of their lives.
When she was two months old, the pediatrician noticed that something was not quite right with her health since her iron and oxygen levels were extremely low.
They sent him to the hospital for more tests and that’s when they received the harsh diagnosis.
“They told us it will be a horrible experience. We couldn’t stop crying for a week, but we are doing our best and we want to fight”.
Jason has one of the strangest diseases in the world: triose phosphate isomerase (TFI) deficiency. It is a very serious disorder with which only 59 people have been diagnosed worldwide. It is characterized by a series of neurological problems, infections, muscle weakness and a shortage of red blood cells.
It is estimated that once the affections in the muscles become very strong, the patient may have his breathing affected.
“The medical team is trying to find a cure or some treatment for Jason.”
The little one is one of the few cases that has managed to be diagnosed so early, even before the neurological conditions began to manifest themselves. However, no doctor in the world knows of a cure for this disease and the Borofkas were warned that their son had a life expectancy of 2-5 years.
Early symptoms include anemia, fatigue, yellow skin and eyes, seizures, heart disease, and shortness of breath.
At 7 months, cute Jason finds himself battling hemolytic anemia. His red blood cells are getting more and more affected, so he needs to receive constant blood transfusions in order to stay strong.
Jason is the only ʋiʋa person today with the disease.
He is currently being treated at Stanford Children’s Hospital and his parents are receiving donations to help doctors in their research to find the much-needed cure.
“He has a spirit full of love. A contagious smile that can melt anyone’s heart. He loves to eat Ƅananas and mashed potatoes.”
The Borofka family decided to publicize Jason’s story to raise awareness about his strange disease and try to find a cure that gives them a little more time with their son.
Don’t leave without sharing the story of this family to support little Jason in the hard fight he is waging for his life.
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