Give words for Leina
Donation protected
This is Erik, Tami and Carol, three volunteers from Finland, Spain and Texas. And this is the reality we lived and what we want to share with you.
October 2017,
The three of us came together by casuality through a volunteering project in a small village in Romania. As the project reached its end we were hungry for more and started searching for new projects on the workaway.info site. In the midst of our search a profile with this sentence came up: “We need volunteers for our daughter Leina”. A family living a bit outside of Paris in village called la Ferté sous Jouarre were looking for assistance and help with their daughter who has Rett Syndrome. Moved by their story we took a plane a few weeks later to meet Daniel, Sandrine, Erwan, Matteo and Leina, a girl of 4 years old. From the moment of arrival the immersion and discovery of what it means to be born with “Rett Syndrome” began.
A rare genetic disease that affects around 12.000 girls (mainly) per year. It causes a ‘rapid destructive stage’ in your development when reaching your 2nd or 3rd year of age. This stage includes motor, mental and linguistic dysfunctions. When you Google this it is described as a loss of purposeful hand skills and spoken language, problems with coordination, repetitive movements and autistic-like symptoms. When you wake up with this it’s totally a different deal. In reality this is a life full of frustration and anxiety, a body full of pain and no words to express yourself with. Leina has no other way of releasing tension than crying and shouting from dusk til dawn. And for us, every night when we finally got Leina to sleep and the last drop of energy brought us all to bed, we found ourselves thinking:
“How can we support and help Leina? How can we turn her situation to the better? The more time that passes, the harder it will get for her to learn how to communicate. She is in her critical period. We need to act now”.
After some research and asking around, her logoped brought us the solution. There is a communication device with eye tracking technology called Tobii PCEye designed for disabled people. The mouse cursor will be controlled by Leina’s eyes. In this way, Leina could be in time to learn how to use her eyes to communicate and make herself understood. It costs 8000€. Expensive, yes, but it could make such a change in her life. The device will be a bridge for her to reach out and communicate with the world we live in. This is where your help is needed.
Together we can build this bridge with Leina.
Every contribution you can give will immediately enrich her life, her relations, her being, her connection with the world. It’s in our hands to give words to Leina. She is now in a critical period for the acquisition of communicative skills. The sooner she gets the device, the sooner she can start learning how to communicate.
And if you want to help us get the word out, you can share this link: (https://www.gofundme.com/wordsforleina )with your friends, family, through Facebook, Instagram…
We are really thankful for all your support, for your contributions and for sharing and spreading this campaign in order to provide words for Leina as soon as possible. Endlessly grateful,
Erik, Carol, Tami
October 2017,
The three of us came together by casuality through a volunteering project in a small village in Romania. As the project reached its end we were hungry for more and started searching for new projects on the workaway.info site. In the midst of our search a profile with this sentence came up: “We need volunteers for our daughter Leina”. A family living a bit outside of Paris in village called la Ferté sous Jouarre were looking for assistance and help with their daughter who has Rett Syndrome. Moved by their story we took a plane a few weeks later to meet Daniel, Sandrine, Erwan, Matteo and Leina, a girl of 4 years old. From the moment of arrival the immersion and discovery of what it means to be born with “Rett Syndrome” began.
A rare genetic disease that affects around 12.000 girls (mainly) per year. It causes a ‘rapid destructive stage’ in your development when reaching your 2nd or 3rd year of age. This stage includes motor, mental and linguistic dysfunctions. When you Google this it is described as a loss of purposeful hand skills and spoken language, problems with coordination, repetitive movements and autistic-like symptoms. When you wake up with this it’s totally a different deal. In reality this is a life full of frustration and anxiety, a body full of pain and no words to express yourself with. Leina has no other way of releasing tension than crying and shouting from dusk til dawn. And for us, every night when we finally got Leina to sleep and the last drop of energy brought us all to bed, we found ourselves thinking:
“How can we support and help Leina? How can we turn her situation to the better? The more time that passes, the harder it will get for her to learn how to communicate. She is in her critical period. We need to act now”.
After some research and asking around, her logoped brought us the solution. There is a communication device with eye tracking technology called Tobii PCEye designed for disabled people. The mouse cursor will be controlled by Leina’s eyes. In this way, Leina could be in time to learn how to use her eyes to communicate and make herself understood. It costs 8000€. Expensive, yes, but it could make such a change in her life. The device will be a bridge for her to reach out and communicate with the world we live in. This is where your help is needed.
Together we can build this bridge with Leina.
Every contribution you can give will immediately enrich her life, her relations, her being, her connection with the world. It’s in our hands to give words to Leina. She is now in a critical period for the acquisition of communicative skills. The sooner she gets the device, the sooner she can start learning how to communicate.
And if you want to help us get the word out, you can share this link: (https://www.gofundme.com/wordsforleina )with your friends, family, through Facebook, Instagram…
We are really thankful for all your support, for your contributions and for sharing and spreading this campaign in order to provide words for Leina as soon as possible. Endlessly grateful,
Erik, Carol, Tami
Organizer
Words For Leina
Organizer
Sainte-Aulde
