Alex Trelinski
A COSTA BLANCA mum has launched an appeal to give her baby the best possible chance of fighting a rare condition.
Stacey Smith from the Benissa area gave birth to Ariya on September 3 last year.
She was diagnosed with Sturge Weber Syndrome(SWS), which affects one in 50,000 babies.
SWS is a neurological disorder marked by a distinctive port-wine stain on the forehead, scalp, or around the eye.
It’s caused by a random gene mutation and in Ariya´s case, it covers 90 per cent of her face and part of her neck.
Unfortunately she suffers from seizures due to Bilateral Brain Involvement and also has Bilateral Glaucoma.
She has had the first of many scheduled eye operations and has to make an eight hour return journey every month to a Barcelona hospital.
Stacey, who has two other daughters and lives with her partner Robert in Fanadix, said that it’s been a tough year:
“My pregnancy was normal and after Aryia was born with a red birthmark, the paediatrician said that it would disappear..The following day, we were told that it was probably SWS.”
Ariya´s seizures started in December and she was prescribed a cocktail of medication.
One of many urgent priorities was to try and save her sight and Ariya’s first eye operation was at Barcelona´s Hospital de Sant Joan de Déu.
That was delayed due to the State of Alarm and also because Stacey’s family all caught the coronavirus.
“The whole family had been to clinics and hospitals and became infected”, Stacey commented.
“Aryia has many more operations to come and I go with her to Barcelona every month for laser treatment on her face and for more eye tests.”
Her next trip is on September 18 and she also has visits pending to Le Fe hospital in Valencia, with doctors considering the option of surgery to prevent any further seizures.
As Stacey explained, there is not just a physical and mental cost to be absorbed, but one of money:
“We are incurring huge expenses and we are getting no help from the government as we need to try new treatments”.
A GoFundMe page has been set up for donations and as Ariya gets ready to celebrate her first birthday, there are plenty of positives for Stacey to reflect on:
“She is very happy and does make facial expressions. Every time she laughs and smiles, it fills us full of hope.”
