Jordyn Robitaille is fundraising
Dravet Syndrome Research
My sweet 9 month old son Miles was recently diagnosed with Dravet Syndrome. Dravet syndrome is a severe and progressive genetic epilepsy characterised by frequent, prolonged, and refractory seizures, beginning within the first year of life. Dravet syndrome is difficult to treat and has a poor long-term prognosis. Disease effects go beyond seizures and often include intellectual disability, developmental delays, movement, and balance issues.
Patients with Dravet syndrome typically need a combination of anti-seizure medications (ASMs) to help control or reduce seizures. Despite this, the disease remains one of the most treatment-resistant diseases and good seizure control is rare, with very few patients living seizure-free.
As you all can imagine my family and I are devastated by this diagnosis and the reality that there is no cure. There is however lots of amazing ongoing research as well as trials happening for gene therapy. All donations made will go directly to the Dravet Syndrome Foundation. Thank you all so much for your love and support of Miles and our family, we love our sweet boy so much.
- M
- K
- P
12 supporters
