Parents of a little girl named Rowan Begbie (3) They openly talked about the rare disease that destroys his life. Doctors Rowan diagnosed a condition called Sanfilipp’s syndrome, often referred to as “child Alzheimer” ,.
There is almost no treatment
Last year was Rowan of Knoxville in Tennessee Diagnosed Sanfilipp’s Syndrome, a rare disease that suffers less than 200,000 people in the US. This genetic disorder causes a change in one gene, which makes it possible The child’s organism is unable to break down certain carbohydrates, leading to brain and nervous system problems.
Symptoms of this rare disease with They usually manifest between the second and sixth year of life, which Rowan also falls into. Sanfilipp’s syndrome cannot be cured at present, but the girl is undergoing a clinical study in North Carolina.
Parents claim that only 12 children receive it throughout America. “We drive there in the afternoon, then we have infusion all day from 7:00 to 17:00 and finally we go home. We can’t be more satisfied with a team of doctors and nurses who take care of her“said her father Bryan.
The girl suffers from many serious symptoms
Spouses founded in connection with the diagnosis of a girl’s charity organization called Rowan Tree Foundation of East Tennessee. Rowan’s parents Bryan and Blair described in detail the symptoms that began to manifest itself. “We were worried because she started talking late, she didn’t understand us and she didn’t hear well. That’s why we entered it in the program of early intervention, “they wrote.
Parents added that Their daughter’s hyperactivity is also worried about which he needs constant care. “To ensure her safety needs supervision. Her poor orientation in space and coordination They also cause crash problems, which regularly brings strikes, bruises and scratches. Rowan is also susceptible to ears and sinus infections, “they noted that A little girl must have tubes introduced to release the accumulated liquid.
Although the little girl was troubled by a number of symptoms, The highlight was when an unnamed mother warned parents of Sanfilipp’s syndrome After seeing Rowan photos on the Internet. After this message Seemed the help of experts who later diagnosed this rare disease.
