Hello and welcome to Jobyna's Website!
Jobyna is 4 years old and a very happy and sweet little girl.
We decided to create this website for her to raise awareness of her special medical condition.
Jobyna was born very healthy and developed normal till about 2 month of age. At the age of 4 month she started having seizures and nothing was ever the same again. After that, symptom after symptom accumulated and we slowly but surely had to face the devastating realization that Jobyna was seriously ill.
We started testing right away and unfortunately we still are.
This is why we need to spread the word. We have all Jobynas medical info listed with the hope that somebody, maybe a doctor or a family with similar problems will recognize this disorder.
We are not only trying to find a diagnosis to have a name, but
- to have possible treatment options
- to have a prognosis
- to plan
- to anticipate
- to belong
- to share
and to help
Please, check out my blog and get updates on Jobynas world!
Our little family: Jobyna, Paul and Milena (on our first vacation!)