Donación protegida
Hi friends,
Once again, in the name of Beatriz, I'm reaching out to you for your support! This challenge is a special one for me, as Beatriz passed away in the summer of 2018. I'm going to swim, cycle and run in the London Triathlon on the 27th July, in her beautiful memory.
My cousin Beatriz was born in 2002, a smiley and healthy baby. When children with Dravet syndrome are born, they seem normal. When she was a few months old, she started getting seizures, more and more frequently.
Dravet Syndrome is a form of intractable epilepsy that begins in infancy. It provokes up to 500 seizures a day, some lasting 1 minute to several hours... There is no cure.
Beatriz fought through hundreds of seizures a day for 15 years.
Growing up, Beatriz made us laugh and smile like no one else, her heartfelt hugs (xi-corações) were pure as her soul. She taught us to be patient. My aunt and uncle fought hard to give her the best life possible. Her treatments were aggressive, a lot of the anticonvulsant drugs she took had a series of intense side effects. But you couldn’t tell, because she was always smiling. She always wanted to be around the family she loved, she loved going to school, dancing and watching The Voice on Youtube.
15% of patients make it to adolescence. The treatments out there for Dravet Syndrome are very limited, daily medication is expensive, and constant care and attention are required. As with any limiting disease of this severity, it has a huge impact on the patient and family’s quality of life.
In 2015 an amazing woman, my aunt Patricia Fonseca, founded the Dravet Portugal Association together with other families- to raise awareness of Dravet Syndrome throughout the country and create a network of support for Portuguese families. They've built a community that supports and gives hope to hundreds of families. They work tirelessly to collaborate with the Portuguese Government, Dravet Syndrome European Foundation and FEDRA (the national association for rare diseases) and other NPO's to drive important research to find better treatments and a cure for Dravet Syndrome.
All donations will go directly to Dravet Portugal, and will make a difference towards families and patients lives.
From all the Fonseca family, thank you, muchas gracias, obrigada :)
Mafi
Once again, in the name of Beatriz, I'm reaching out to you for your support! This challenge is a special one for me, as Beatriz passed away in the summer of 2018. I'm going to swim, cycle and run in the London Triathlon on the 27th July, in her beautiful memory.
My cousin Beatriz was born in 2002, a smiley and healthy baby. When children with Dravet syndrome are born, they seem normal. When she was a few months old, she started getting seizures, more and more frequently.
Dravet Syndrome is a form of intractable epilepsy that begins in infancy. It provokes up to 500 seizures a day, some lasting 1 minute to several hours... There is no cure.
Beatriz fought through hundreds of seizures a day for 15 years.
Growing up, Beatriz made us laugh and smile like no one else, her heartfelt hugs (xi-corações) were pure as her soul. She taught us to be patient. My aunt and uncle fought hard to give her the best life possible. Her treatments were aggressive, a lot of the anticonvulsant drugs she took had a series of intense side effects. But you couldn’t tell, because she was always smiling. She always wanted to be around the family she loved, she loved going to school, dancing and watching The Voice on Youtube.
15% of patients make it to adolescence. The treatments out there for Dravet Syndrome are very limited, daily medication is expensive, and constant care and attention are required. As with any limiting disease of this severity, it has a huge impact on the patient and family’s quality of life.
In 2015 an amazing woman, my aunt Patricia Fonseca, founded the Dravet Portugal Association together with other families- to raise awareness of Dravet Syndrome throughout the country and create a network of support for Portuguese families. They've built a community that supports and gives hope to hundreds of families. They work tirelessly to collaborate with the Portuguese Government, Dravet Syndrome European Foundation and FEDRA (the national association for rare diseases) and other NPO's to drive important research to find better treatments and a cure for Dravet Syndrome.
All donations will go directly to Dravet Portugal, and will make a difference towards families and patients lives.
From all the Fonseca family, thank you, muchas gracias, obrigada :)
Mafi
Organizador
Mafalda Fonseca
Organizador
England