March Warrior
Faelin
Meet Faelin – a happy, vibrant and fun-loving warrior from the Netherlands! 6-year-old Faelin's journey with epilepsy began when she experienced her first seizure at just 7 months old, on her mother's birthday.
Over the following months, she endured three more seizures, prompting medical investigations.
They began with blood tests, and eventually, they received a diagnosis: epilepsy caused by a mutation in the SCN1A gene. The diagnosis of such a severe form of epilepsy left her family uncertain and anxious about her future.
Treatment commenced with medications, but Faelin's seizures not only persisted, but actually worsened. In August 2018, a routine vaccination triggered such severe seizures that she was placed into a coma, requiring life support for six days.
This heartbreaking event marked a turning point, as her family then recognised the gravity of her condition and realised their everyday life needed a big shakeup.
Faelin’s family now live quite an isolated life as a way to minimise exposure to illness – a trigger that can bring on life threatening seizures.
Even so, it’s almost impossible to avoid illness. Just this last Christmas, a common cold led to a prolonged stay in intensive care.
Although Faelin’s local doctors are excellent – they are very supportive and have offered innovative treatments – there has been no end to her seizures with treatment so far. In desperation to help their precious Faelin, the family began searching for alternate specialist solutions.
The search led them to Dr. Sullivan at UCSF in California, renowned for his expertise in treating refractory SCN1A mutations.
Collaborating with Faelin's Dutch doctors, Dr. Sullivan has offered hope for a better outcome. Faelin was enrolled in an upcoming clinical trial in San Francisco, USA, and her family commenced an ambitious fundraising campaign to cover the expenses: the medical costs and living expenses for the 9 months they will need to stay in the US.
They have raised an astounding amount but still need around 300 000 Euros to get there.
Interestingly, the campaign was launched on February 14th 2020, Valentine's Day. Saint Valentine is the Patron Saint of people with Epilepsy.
Every day for Faelin’s family is filled with challenges, but they are determined to improve her quality of life. They envision a future where she can enjoy simple childhood experiences without the fear of seizures looming over her. Their faith in ongoing research and clinical trials fuels their hope for a breakthrough that could transform the lives of all children battling severe epilepsy.