Teodora and Adela are painting purple butterflies and making purple bracelets and ribbons – beautiful!
They take their children to Constanta, to ride a gold-mane horse – how happy!
Teodora and Adela are mothers of children affected with Dravet, a rare and untreatable form of epilepsy. They had to reinvent their lifestyle to keep their children alive and relatively safe and to help other families faced with this merciless syndrome.
Purple butterflies, bracelets and ribbons help spread their message. Going to Constanta for special therapy helps their children come closer to a normal life – the one we usually take for granted.
Together with the neuro-paediatrician Magdalena Sandu they
are The Association for Dravet and Other
Rare Epilepsies. Their cause is so difficult because this syndrome is
impossible to diagnose in Romania and the authorities don’t take it into
consideration. Families with children affected by Dravet - around 40 in Romania - lack access to proper
treatment or, even worse, are ashamed to make their voice heard.
We, in PwC run4fun Club, are proud to share their story. We believe in people who find strength in their fragility. We admire Teodora’s and Adela’s restlessness in lobbying the authorities, in talking openly about the condition that affects their dearest ones, in educating and encouraging families to fight for a normal life and social inclusion.
- a rare and untreatable form of epilepsy
- one in 20,000 children is born with Dravet Syndrome
- in Romania around 40 patients are clinically diagnosed
- the disease is much more spread, but the real numbers are unknown due to the lack of information and funds for genetic testing
In just one year of activity the Association has made significant progress in three areas:
MEDICAL NEEDS (genetic testing, blood and neuro investigations, medication, different therapies)
- the Association lobbies the Health Minister in order to include Stiripentol on the list of reimbursed drugs
- training seizure alert dogs
INFORMATION AND COMMUNICATION (studies, conferences, awareness events, promotional objects)
- creating a specialized library, with up to date medical studies, much needed by both medical staff and by families
DAY TO DAY SUPPORT AND COUNSELING (current expenses, moral support to the parents and extended family)
There are also other projects to come true through their hard work and determination, but The Association for Dravet and Other Rare Epilepsies also needs the help of the community. This means all of us.
Our pink runners are the proud ambassadors of the Association. We are wearing the Dravet colours in official competitions, be it by a sticker or the purple ribbon. Our runners also help by speaking about this cause in their circles – it is important that people and authorities in Romania become aware about this condition. We also encourage the redirecting of the 2% of the income tax towards the Association.
It is as simple as that: think how many people you know/ friends you have who could help and change the perception on epilepsy and the Dravet Syndrome. The voice of the Association would become the voice of the many and turn hope into reality.
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