What about our son?
A two-year-old boy suffering from severe facial deformity has baffled doctors. Doctors can't diagnose 2-year-old Aidan Smith. The boy's face is swollen and deformed, besides, strange age spots appear on it. Aidan may never be able to talk or walk.
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1. At first, doctors thought it was Proteus syndrome, but the results of the biopsy did not confirm this guess. They now believe it could be clove syndrome, which can cause abnormalities in the development of the blood vessels, skin, and spine.
2. Aidan was born prematurely - eight weeks. He weighed almost 1.5 kg. Then the boy's parents, Vicki and Karl, did not suspect that he was born with some rare disease. When swelling began to appear on his face, back and legs, his parents panicked, and doctors suggested that the boy might have brain damage.
3. The parents realized that Aidan might never learn to walk and talk and might not recognize his own parents. Another shock was the moment when the doctors invited them to the lessons of artificial respiration in case their baby suddenly stops breathing. “Suddenly you realize all the responsibility that you bear for this small life,” says the father of the child.
4. “I never thought I could take care of a disabled child,” the mother admits. “But Aidan proved otherwise. I love him very much and he loves us back.”
"He's a real fighter," Carl adds. Now for Aidan's parents, the worst thing is not knowing what kind of disease it is. But the family is positive, especially now that the fear that the child may not recognize his own parents and brother has disappeared. The boy recognizes the faces of his relatives, smiles at them and even blows kisses. Aidan's older brother, 13-year-old Daniel (from Vicky's previous marriage), is not at all embarrassed when asked questions about his brother's appearance. “This is my brother and I don't care what he looks like. I love him". Carl says that the ignorance and incivility of passers-by, at times, infuriates him. One guy in the museum came close to them to look at Aidan's face. Carl tries to ignore all these ignoramuses.
5. Health problems entail financial problems. And due to the fact that doctors cannot diagnose, these problems are only exacerbated. Carl has already left work to stay at home with the baby. Vicki had to switch to part-time work, naturally with pay cuts. Aidan still wears diapers and eats baby food, which only adds to the cost. Also, if the boy cannot walk, they will have to rebuild the house to suit his needs. But if Vicky loses her job, they'll have to move out altogether. And since the diagnosis is still unknown, parents can't make a meaningful announcement to fundraisers for charities. After all, they still do not know what exactly they need to treat?