TEN-MONTH-OLD Farie Shannize Nyakuruita, who has the rare Noonan syndrome and pulmonary stenosis disease, needs financial assistance for urgent medical attention.
by Aaron Ufumeli
Noonan syndrome occurs in one in about 2 500 people and affects many areas of the body, mainly the heart and the skeleton.
Farie’s mother, Felicity Nyakuruita, says she started noticing something was wrong when her daughter was three months old and since then it has been one problem after the other.
Several visits to Harare Central Hospital to seek help have yielded very little.
So tough has been Farie’s upbringing such that at seven months, tests by doctors at Parirenyatwa Hospital revealed she had visual problems and that one of the eyes is squinted. It was recommended that she starts wearing spectacles.
“Farie has one of her valves that does not close fully, clean blood mixes with dirty blood, which is not normal hence her slow growth,” Nyakuruita said.
“Clean blood is supposed to be pumped into the heart, while dirty blood is supposed to come out. She only started sitting on her own at nine months and she cannot crawl because her legs are weak and we have sleepless nights because her temperature is always high, so this is the main challenge that we face.”
Nyakuruita appealed for financial assistance to consult a paediatrician who can refer Farie to a heart specialist.
“We wanted to go to South Africa, but the cost of R5 000 per day in hospital was beyond our reach,” she said.
Farie has a short neck, one of the characteristics of the Noonan syndrome. Approximately 50% to 70% of individuals with Noonan syndrome have short stature.
At birth, they are usually of normal length and weight, but growth slows over time. Abnormal levels of the growth hormone may contribute to the slow growth.
Added to that, Farie has weak legs, visual and hearing problems and also needs a brain test.
As is if this is not enough, she also has a problem with the narrowing of the valve that controls blood flow from the heart to the lungs.
Well-wishers can contact Felicity Nyakuruita on 077 2 709 306.