Help Alejo continue his Dravet Syndrome treatment

Alejandro, or Alejo, is a 4-year-old boy from Mexico. He was diagnosed with Dravet Syndrome (a rare, catastrophic, genetic type of epilepsy with a 20% mortality rate) a couple of years ago at Cooks Childrens' in Fort Worth, Texas. While in Texas his parents learn about new treatments approved in the US that helped children better control seizures. Unfortunately neither of those two drugs - Epidiolex and Flenfluramina - are available in Mexico. So in late 2021, they went back to the US, this time to Miami, Florida, to find any mean possible to get Alejo on these two drugs... they made it!! Since Alejo started on Flenfluramina, his seizures have dramatically dropped from 180 episodes in November to 120 in December to 86 in January. The first few days of February 2022 have been even more encouraging: he has averaged less than one seizure a day in the first eight days of the month. But the increased costs of living in Miami have them all at risk of losing their ability to pay rent and essential expenses. Alejandro’s new treatment can’t be halted; doing so will put his life in jeopardy. Help them fund their stay in Miami for the next six months so that Alejandro continues his treatment.

Thanks to all how have contributed to this campaign.  As the organizer of this fundraiser I want to also introduce myself:

I'm Luis Gerardo Torrijos Perez. I'm a Mexican immigrant with permanent (legal) residency living in Wooster, Ohio. When I was 6 years old I met Bernardo at elementary school. Life, school and friendship kept us closely together until the time we both graduated college. When I graduated I moved to a new city and although for the first time there was considerable distance, Bernardo and I always kept in touch. We went on three vacations together and he attended my wedding. I had already moved to the US when he met Marcela but I happened to visit Mexico a few months after Alejandro was born so I was able to be one of Bernard's first friends to meet his newborn.

Since Alejandro’s seizure began I was in touch as possible but how much I could help them was limited due to distance. Now that’s changed. A few months ago Bernardo asked me for help since they needed to fundraise so that Alejandro could start on new medications in the US. Every dollar collected through this campaign will be used to cover Marcela and Alejandros expenses while required for both of them to stay at Miami while Alejandro is receiving medical treatment. That includes housing, groceries, and transportation to and from the hospital and medicines when not covered by insurance.

Some months ago I made Bernardo one of my credit card authorized users. With that credit card Marcela pays all of their groceries, medicines and transportation needs and at the end of the month I pay the credit card balance from the GoFundMe deposits. I also make a direct deposit to their landlord for their housing expenses using the money collected from this campaign.

 

Alejo es un niño mexicano de 4 años. Cuando tenía dos fue diagnosticado con Síndrome de Dravet en Estados Unidos. Mientras estaban en el hospital donde fue diagnosticado, sus papás supieron de nuevos tratamientos aprobados en Estados Unidos específicamente para esta enfermedad. Las dos medicinas se llaman Epidiolex y Flenfluramina y - desafortunadamente - ninguna está disponible en México. Así que en 2021 regresaron con Alejo a Estados Unidos, a Miami, Florida en esta ocasión donde buscaron los medios para que Alejo comenzara el tratamiento con dichas medicinas... y lo lograron. Desde que Alejo toma Flenfluramina el número de convulsiones mensuales ha disminuido de 180 en noviembre, a 120 en diciembre, a 86 en enero. Los primeros días de febrero 2022 han sido aún más alentadores pues Alejo tiene un promedio de convulsiones menor a una por día. Sin embargo el alto costo de la vida en Miami está arriesgando la posibilidad de pagar una renta y gastos escenciales. El tratamiento de Alejo no se puede suspender ya que el descontrol neurológico pondría en riesgo su vida. Ayúdales a conseguir el fondeo suficiente para que Alejo continue su tratamiento los siguientes seis meses.