Sayen is a special girl.
Special.
So much so that it is part of those statistics that hardly one thinks that they will affect him one day.
Like that one in five million live births develop
congenital Pallister-Killian syndrome
.
Sayen got it.
A rare disease that, however, is not what worried Anouk the most.
What intrigued Anouk was knowing why her sister didn't have a colony like her.
If the Anouk colony existed, why not the Sayen colony?
And that is how Sayen eau de toilette was born, which reaches the market thanks to the initiative
For all the rare ones
that the little girl's parents have promoted.
The family of Puerto de Sagunto (Valencia) has succeeded in
ensuring
that the
perfumer Jimmy Boyd
, known for having created the most expensive perfume in the world, has now accepted the challenge of shaping the scent of those rare people who feel so forgotten by society. sometimes.
The
colony Sayen
is therefore a "rare colony water, made with 100% natural ingredients, vegan, unisex and designed for any type of skin."
As Beatriz and Roberto, Sayen's parents, explain, the only thing they seek is to give visibility to people who suffer from rare diseases, "almost always forgotten by the Administration and society."
"We are interested in generating conversation around rare diseases to improve their integration into society," they comment.
But the idea was
Anouk's
.
"The story is actually born of the love between sisters," admit Beatriz and Roberto.
When Anouk asked her mother why her sister Sayen didn't have her own cologne like her, that was when the idea began to take shape and the inspiration to create a cologne "with a scent of the future" came from.
The future of people with rare diseases, such as Sayen's, who at just a few months old has been diagnosed with genetic Pallister-Killian syndrome.
There is no specific therapy or cure for the disease, but there are supportive therapies, such as physical therapy and speech therapy, which can help and support the development of certain skills in children.
The affectation of the disease is varied, but most of the children suffer from
intellectual disability and psychomotor retardation
.
Hence, the Valencian family has proposed to launch a
campaign on the crowdfunding platform Ulule
.
30% of the profits will go to ensure the future of little Sayen and the associations ASEMI, ATEMDI and PKS ITALIA, European leaders in the research of Pallister-Killian syndrome.
Sayen also has a song performed by
Tamara Mae
and blind singer
Catiana
.
In addition, several well-known faces such as
Belinda Washington
, actress
Farah Hamed
or singers
Fran Valenzuela
and
La Moros
have joined the initiative to make this rare disease a disease ... less rare.
According to the criteria of The Trust Project
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