Tallulah Taylor
THE expat community in Duquesa, on Spain’s Costa del Sol, have rallied round to make a big difference in the life of Maria Benitez Gutierrez, a six year old with a rare form of epilepsy known as Dravet Syndrome.
The condition means that the six-year-old suffers frequent seizures brought on by any number of factors from tiredness to a stumble to a bout of the giggles that makes it very difficult to live a normal life.
Her mother, Maribel describes how Maria was first diagnosed with the illness when she was just five-months-old.
The first seizure occurred after a day at the beach when Maria’s arms suddenly went completely stiff and her head started convulsing uncontrollably.
They rushed her to hospital in Marbella where the child had another fit in front of doctors. She was transferred to Madrid’s Hospital de la Paz where her condition was confirmed.
“The first thing the doctors tell you is not to look at the internet, but the first thing a parent does is look for information about the illness your child has been diagnosed with. Discovering that your daughter could die of a seizure is a shock. It’s very hard.”
Because it is such a rare disease, there is limited research and treatments available for the condition.
There is no cure and although anticonvulsants are prescribed to relax the brain, there is no drug that can definitely prevent seizures.
Maribel describes how they can come at any time. “She’s having a good time and laughing and then starts to convulse. She stumbles and starts crying and that triggers a convulsion. If she’s not rested and doesn’t sleep, the convulsions come …. It’s a nightmare.”
Every minute of Maribel’s day is taken up with caring or worrying about her daughter, plus the financial strain of surviving with a meagre €300 a month disability allowance.
When friend and neighbour, expat Rachel Gray, learnt how little financial support was provided to help make Maria’s life easier, she came up with a plan.
She found out that three simple items could make the world of difference to Maria and her mother and set about raising the money to pay for them.
A heart monitor bracelet would provide early warning that something was amiss and could alert Maribel if she was in the next room, thus providing her peace of mind to leave her child unwatched.
A safety helmet would add extra protection from serious injury when convulsions overtook Maria.
And a specialist pushchair would allow more mobility.
So Rachel recruited the help of her local, the Rose and Thistle in Duquesa, and teamed up with owner Simon Dearing and weekly quiz master Kevin Blenkinsopp to raise the funds.
“The community really came together with companies and businesses donating prizes and even the DJ for the ´Northern Soul` night donated his fee!” Rachel told the Olive Press.
Within a couple of weeks they raised the €4,000 needed to buy the items which were given to the family on Three Kings Day, January 6.
Watch this video of Maria recieving her new buggy:
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