Zekeal, or Troy Ishoy, as we all call him, was born in May 2015. From day one he’s been a very active baby full of life. He developed normally and by 18 months old he was walking, starting to put words together and making everybody fall in love with his beautiful blue eyes, smile and funny personality.

In February 2017, when Troy was 22 months old, Dad (Justin), noticed that he was blank and look like he was resting on the living room floor. He tried to catch his attention but noting happened. After 20-24 seconds Troy was back, playing and smiling.

A few weeks later it happened again while he was eating. This time Troy stopped breathing. Justin rushed him to the hospital. After several blood tests, EEG and a MRI doctors concluded that Troy was seizing. The reasons were unknown. While recovering at the hospital we played “Hotel Transylvania”. Troy laughed and said “bla bla, bla bla”… it was the last time he said a word.

Since that day Troy’s and our lives changed forever. Seizures started showing in different ways, from absent for a few seconds, to tonic-clonic seizures and doctors tried several different medications and sometimes it took 6 hours to make the seizures stop. Troy’s walking turned wobbly, his fine motor skills and cognitive ability declined.

Numerous doctors, therapists and different medicines were tried but our little man kept declining. With each new treatment there would be temporary improvement, but then Troy would decline further. Every time we thought he was on the path of getting the seizures to stop Troy woulkd suffer a further set back within a week or two with additional complications.

By mid 2018 Troy’s Neurologist suggested a genetic test and in October 2018 we learned that Troy has a mutation in the KCTD7 gene. This condition was discovered in 2012 and at that time, only 16 kids had been diagnosed worldwide. On top of that, Troy’s mutation was in a different part of the protein than the other children. This mutation provokes a rare disease: Progressive Myoclonic Epilepsy type 3 (EPM3). So far, there is no treatment or cure for this illness.

Kids with the KCTD7 condition degenerate quickly and by elementary school age they are not mobile, they are non-verbal and present a remarkable developmental delay. Some kids lose their sight, some experience dementia. Most kids don’t survive through the teen years.

To say that we were devastated is an understatement. How could this happen to our perfect, smart, full of life little man? Justin and I decided to do as much as we could to save him. We started a strict Ketogenic Diet for seizures in November 2018 and since then he only had one seizure. We started a CBD oil treatment in May 2019 and that also helped with the seizures and myoclonus. We also found out that over 50 kids have been diagnosed so far and got in touch with a handful of the parents of the KCTD7 kids in the US and Canada.

We also got in touch with Dr. Minassian. He is based at the University of Texas Southwestern Children’s Hospital in Dallas, and is currently researching on this specific gene. In less than a week we had a phone call with him and his colleague. Dr. Minassian is trying to prove that gene replacement therapy works in lab rats with the mutated gene. If he proves it, then he can conduct a medical trial in humans, which would include Troy. This is our hope. With the funds, the research should take about a year to get results. Without the funds, it will take longer.

Troy, and the other children don't have much time. That’s why we decided to create the “They call me Troy Foundation” to raise the money needed for Dr. Minassian to do his research, as well as to help other kids with this condition and epilepsy research in general.

We dream to see Troy running again, listen to his sweet voice again, see him dancing and playing with his siblings. We want him and every other kid with this condition to live a long, healthy, happy life.

"Please help me to find a cure for my friends and I"  Troy