Only Person in the World with Rarest Condition is Three-Year-Old

Little Vilda has a condition so rare that she is known to be the only person in the world to suffer from it. The three-year-old from Kungsbacka, Sweden plays like a normal infant, but she isn’t a typical child. Vilda suffers from sleep apnoea, Down’s syndrome, a heart condition and a lung disease – pulmonary arterial hypertension. This combination is so rare that she is the only living person in the world to have it.

Her mother Maria, 29, comments, “We don’t have any hope anymore. We know that our Vilda will die.” She carries on… “There is nothing that doctors can do to help her and in a few years the pressure in her lungs will get too high and she will stop breathing.”

“The doctors have said that if she stays healthy maybe she can get to experience life as a teenager.” She added.

When Vilda was born, she had two holes in the heart and surgery was to be undertaken of her being just four months old. However, after doctors discovered pulmonary arterial hypertension (PAH) – which shouldn’t occur in a new born; the surgery was cancelled. Maria says, “I will never forget that day. The crowd was quiet in the room and everyone started behaving strangely. The doctors called in their phones and surgeons came running. They walked out of the room, but I could see them through the glass doors. It was like a bad movie.”

In Vilda’s case, doctors discovered that the two holes in her heart were acting as vital pressure releases. If these were repaired, then she would die. Conversely, the combination of Vilda’s illnesses also means it is impossible to reduce the pressure in her heart and lungs.

PAH is a rare and serious lung disease, which causes the blood pressure in the lungs to become unusually high. Due to this, the heart needs to work much harder, which over time causes it to become damaged.

Parents of Vilda; mother Maria and father Anders, 32, have now stopped the search for treatments and give more concentration to giving their daughter as good a life as possible. Maria says, “People say that we must continue to hope.” “But there’s nothing that can help Vilda. We cannot grieve anymore. Now we can only rejoice over the years we will have with her.”

Vilda is not able to go to pre-school as the risk of infection is too much and the slightest cold could kill her. Despite the sadness, Vilda is happy and fighting her way through. She communicates with her mother through sign language and they both play and have a laugh daily.

Behind this rare condition is an ordinary girl, who is lively and loves to read, listen to music and dance.

Maria also says, “Vilda is my idol. She is a real fighter and even though she is sad, she continues to smile.”