The two-year-old boy from Wales is the only person in the world diagnosed with such a rare disease that doctors have not even come up with a name for it.
Young Briton Alfie Jones from Bridgend, Wales, puzzled doctors. The boy was born with an unprecedented number of different health problems, including: a hole in the heart, deafness and partial blindness. What doctors have decided to call Alfie's disease, in scientific parlance, sounds like an "unbalanced chromosome rearrangement" that has never been diagnosed before.
Alfie is unlikely to ever learn to walk, due to a congenital dislocation of the hip, and speak, but his mother, 37-year-old Maria, says her son has become "a ray of sunshine."
“Despite everything that happened to Alfie, he is very happy because everyone who meets him immediately falls in love with this little man. We have already reached the stage of perception when we look at him and see only our son in him, I love him so much. We had some family problems before Alfie was born, but he made us stop and think about what was important. He became the glue that holds our family together,”Maria told reporters.
Doctors have confirmed the fact that no one in the world has previously been diagnosed with a disease that affects chromosomes 11 and 15.
Maria's husband, Ken, 43, says medical experts can't tell how long the baby will live. Despite the uncertainty, the couple says they are the happiest parents in the world because they have such a son, especially since he has just learned to smile.
Maria, who has six children besides Alfie, said: “The first question we asked the doctors was how long he would live. However, no one knows, because such cases have not been registered before. The doctors told us that he is unique, that they have never seen anything like it before. We really don't know what to expect in the future."
Marie and her husband are trying to raise the $ 30,000 they need to equip a sensory room and purchase the home appliances vital to Alfie's survival.
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She added: "I hope that if we can raise funds and get everything we need, then Alfie will live happily ever after."