First seizures started at tai in 2.5 months. Doctors made the diagnosis “epilepsy” and prescribed anticonvulsant drugs. Therapy did not help. Drugs, although they have been tried a lot, the disease cannot yet be. Experts suggest the genetic nature of the disease and believe that a special test will help to select effective treatment and rehabilitation.
Ty Ershova. Photo: Marina Trapeznikova
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Tae just was prescribed medication “at random”
From tai has a twin sister, Sonia. Sonya tells Tae stories, playing “Patty cake”, helping her to drink from the bottle, raises the nipple. Itself Ty hands to do much of anything until you can.
Ty loves music, especially fun children’s songs, most of the “Winged swing”. She tries to sing by herself, your “baby” language – Ty has not yet said. But contagious laughs. “Fun girl, funny person, despite his illness and severe attacks, very rarely cries,” talks about daughter’s mother Tatiana.
Ty and Sonja. Photo: Marina Trapeznikova
Ty and Sonja were born thanks to IVF. “The birth was difficult, in the 37th week, but then like everything was normal,” – says Tatiana. The first attacks began at tai in 2.5 months – periodically began to tremble violently, the handle.
Doctors diagnosed epilepsy and prescribed the drug, from which, according to Tatyana, the child is instantly turned into a “vegetable” – Ty even the head to keep forgotten.
But the seizures did not recur and began rehabilitation: massage, exercise therapy. Lost skills were recovered.
Photo: Marina Trapeznikova
In 10 months again attacks – is quite similar to those of the first. The girl suddenly started to nod erratically moving hands, bend over, spasm drove the facial muscles. Medication did not help. “The next six months Tae just “random” prescribed drugs”, – says Tatiana. In patients receiving once the seizures stopped, but blood pressure rose, and the drug was canceled.
To schedule a treatment, you need to do a genetic test
Illness again reminded of themselves this summer, when Tae was already 2 years. The attacks were again similar to the previous one – the body, hands and feet suddenly started to bend and unbend the child violently shook. They repeated 4-5 times a day. In August Tatyana with Taya came from Nizhny Novgorod to Moscow. In a Moscow hospital, the frequency of the attacks has been reduced. Ty even started to get on my feet while supporting.
Ty’s mom. Photo: Marina Trapeznikova
To determine the diagnosis and prescribe the right treatment, you need to do a genetic test to which the family has no money.
In Nizhny Novgorod Ty goes to school. Mom says that the girl is trained, but the process is very slow: tactile skills she mastered a month.
State of uncertainty perhaps the most difficult. Thai parents don’t know how sick their daughter, what is she after, how to remove the seizures from which the girl suffers from, what classes she needs to develop, even at their own pace, but this pace…
Ty with his parents and sister. Photos from the family archive
Moscow doctors recommended Tae to undergo a genetic test “polnochnoe sequencing” to confirm the diagnosis and begin treatment, select the required rehabilitation. The analysis is complicated and expensive, in a family where working single dad, money to study there. Parents already took credit for rehabilitation. Now they have a year to pay it. Let’s help little Taya!
Fund “Pravmir” helps people with unknown diagnoses to perform an expensive genetic studies to accurately determine the disease and to get appropriate treatment. Help can you by donating any amount, or make a regular monthly donation of 100, 300, 500 rubles and more.
Go to the page collection at the Foundation’s website