When Asher was born in January of 2003, we never expected just how much it would change our lives.  We started seeing rhythmic jerking in his extremities by the end of February of that year and he had his first Generalized Tonic-Clonic seizure in April.  Thus began the long road of drug cocktails, testing, information gathering, more testing, being scared out of our minds, more drug cocktails, more information gathering, more testing; and through it all the seizures were never controlled and his development essentially stopped.

Despite all of this, Asher was an unforgettable person.  Many people have told us over the years how just meeting him and hearing his story made a difference in how they saw life.  He inspired one of his school paraprofessionals to go back to school to get her teaching degree in special education.  He was happy and he loved everyone unconditionally.

Unfortunately, Asher is one of the 15-20% mortality rate statistic associated with Dravet Syndrome. We lost him on the very early morning of June 20, 2020.

We are raising money to help spread the awareness of Dravet Syndrome, fund research into therapies/cure, and make resources available to the families of those with Dravet.  As you can imagine, Dravet will completely upturn a family's lives.  Incomes are impacted as one parent may become full-time caregiver.  Friend groups change as the people you were having babies along side begin to deal with parenting situations different than yours.  Daycare and babysitting become an issue as most people just aren't experienced with or qualified to deal with your child's needs.  Siblings of kids with Dravet can struggle to connect with others in their peer groups. The Dravet Foundation provides resources for all of this, from initial diagnosis through bereavement, in the unfortunate instances where it is needed.

We had never heard of Dravet Syndrome until Asher became eligible to participate in drug testing for a new CBT-based therapy.  Suddenly we had a name for what we'd been dealing with for 15 years.  It wa a relief to know we weren't the only ones out there.

Please help us by donating now in funding research, increasing awareness, and educating and empowering families. It's a legacy worth fighting for.

Thank you for helping Asher's memory continue to make a difference.

More information about Dravet Syndrome can be found on the Dravet Syndrome Foundation's website, including resources for caregivers and doctors, as well as ways you can get involved.