Tell us about yourself and the Dravet patient in your life
My name is Mariam, mother to a Dravet syndrome patient. Close to Lake Victoria, in Kenya, a strong and brave little boy known as Teko-was born a healthy boy, very handsome and sweet. Teko loved to sing and could imitate his father singing and he knew how to go with the rhythm. In fact by the age of two year he had mastered some songs.
When did the patient’s seizures begin?
Teko had his first seizures when he was six months old. It was a frightening experience being that he was our first child and we had no idea of what was going on. We went to the hospital and were told that it was just febrile convulsions and it will stop soon. 5 months later he had another major seizure which went for one and half hours, followed by other tonic clonic seizures. This raised eyebrows and we decided to go for further testing. They did an MRI and EEG along with countless additional tests but they still did not know the cause or have any solutions. For all that time Teko has been in and out of the hospital with multiple seizures. When he was three year years, eleven months old we did genetic testing and Teko was diagnosed with Dravet syndrome.
In his 4yrs of life Teko has experienced a lot of stigmatization and seclusion but being the smiley and happy boy is he, he overcame that and people just can’t help but to love him.
What is your hope for the future your loved one? For the Dravet community?
My hope for the Dravet community is we are going to find a cure.
What advice do you have for newly diagnosed Dravet families?
My advice to the newly diagnosed members is that it is never the end of the road, its just a new chapter and a way of viewing the life from the positive side. Let your weakness become your strength, because our Dravet patients needs to see us strong and positive so that they have that hope in life. Also try join support group so that you can not be alone in this journey.
Were you the recipient of a Patient Assistance Grant?
We have not yet received any grant hopefully we will some day.
