Our family is living in Switzerland with our beloved daughter Vivian who is 14 years old. Vivian has been suffering from a rare and catastrophic epilepsy disorder caused by a genetic mutation called Dravet Syndrome her whole life. Many severe epileptic seizures have influenced her quality of life and made her cognitive development as well as her motor function decreasing a lot over the course of time. In average, she presently suffers from about 25-30 tonic clonic and at least as much complex partial seizures a month. In addition, she has orthopedic problems such as pes valgus and a scolioses. She now is fully dependent on us parents and other caregivers. We have tried many different medications and treatments including a ketogenic diet, CBD or the newly released Fenfluramine. All without success.
What is the Crowdfunding about?
Vivian now has the wonderful opportunity to participate in an investigational genetic treatment and we would love to take this chance! It is very promising for her kind of disease but only available in the USA so far. As this medication treats the underlying cause of the syndrome and not only the symptoms there is high hope to improve the condition of children like Vivian. We are in the lucky and grateful situation, that this medication is sponsored by the company who runs the clinical trial.
Course of the study / estimated cost
In a first phase of the trial, 11 visits are scheduled. In an ongoing phase, it is assumed that there will be two to four visits/year. Travel expenses are not covered by the company who runs the clinical trial. These costs sum up for us as a family, as they include expenses like air travels, accommodation, ground transportation, medical equipment rentals, PCR-tests for Covid 19, etc. They are calculated as follows: About 16 visits for a period of two to three years (per trip for our family of three persons around CHF 5’000.-) makes a total of approx. CHF 80'000.- (equivalent to around US$ 90'000.-).
We truly wish to try to get some of Vivian's abilities and quality of life back and get her some seizure relief! Imagine that she was running around and riding a bike as a smaller child and now is wheelchair bound! She could verbally express her thoughts and wishes at a younger age and now, on good days, only has a few words left or doesn't speak at all. She has a lot of days where she is unable to swallow. Drinking or eating is not possible on those days and therefore she has a gtube/button.
About Dravet syndrome
This disease can kill. Unfortunately, this already happend to various of other Dravet boys and girls. Children with Dravet syndrome have a high risk of passing away by SUDEP (sudden unexpected death in epilepsy) before adulthood.
More information about Dravet syndrome can be found here: www.dravetfoundation.org
With this medication we hope/wish for better seizure control, stopping the regression and -in a best case- a possible restoring of Vivian's previously managed verbal and motoric skills.
After hoping for one year, we now received the OK to fly to the United States for a first appointment in August 2021! We are very excited and hopeful!
From the bottom of our hearts a big THANK YOU to all of you for your valuable support!
Caroline and Marco with Vivian