Jordan Gallagher was diagnosed in the womb with alobar holoprosencephaly, or HPE, a condition with such a poor survival rate after birth that his mother was encouraged to have an abortion.
She decided not to, and her son is now a year old.
Jordan has the most severe form of the disease, where the largest parts of the brain are fused together instead of being split into left and right hemispheres, according to the Daily Mail. Children are rarely born with it, and those who do die by the time they reach four months old half the time, according to the report.
Jordan’s mother, Julie Gallagher, said: “Every day is a wonderful bonus. I would never want to put my son through anything that would make his life a misery – but he’s just carried on fighting.”
Before Jordan was born, doctors warned Julie that her son would be facially disfigured and would have learning difficulties. This did not seem to bother her. Even when they encouraged her to abort Jordan up to 40 weeks of pregnancy, she refused, the report states.
“I thought even if I could have one precious minute with my child, that would be enough,” she said.
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Most support groups for parents of the condition are in the United States, and doctors around the Gallaghers in the U.K. are not very aware of the intricacies of the condition, the report states. Julie told The Sun that sometimes she herself has had to educate some doctors on the condition, and she’s not totally out of her element when she does that: she’s a children’s ventilator support worker at Royal Hospital for Sick Children in Glasgow.
“The doctors had to read books about it before doing anything, the condition was that unheard of,” she said.
It has not been an easy ride, and she and her husband, Alistair, realize that any day could be Jordan’s last. Jordan has struggled with breathing problems, allergies, bronchitis and seizures, among other things, but his parents say he is a fighter.
“We have always vowed we would draw the line when we thought that things were getting too much for Jordan, his will to live, however, has us in awe of him.”