Ariya, a sick baby from Benissa battles Sturge Weber’s very rare disease

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Every month the mother and grandmother take a little girl, who is now one year old, to the Sant Joan de Déu hospital in Barcelona, ​​where they operated on her eyes – They know that it is a condition that she will have for the rest of her life.

The story

Stacey and Robert live in Benissa and have three daughters. Little Ariya, turns one year old on September 3rd. A year of struggle. “The pregnancy was normal but the baby was born with a red face. The pediatrician told us it was a birthmark and that it would go away. But the next day he quickly told us that it could be a birthmark due to a vascular malformation,” her mum Stacey explained. The parents then heard for the first time, the name of a rare disease that affects 1 in 50,000 babies. It is called Sturges Weber syndrome. “We know that our little girl is going to have this syndrome for life. Usually, the facial angioma is on one side of the face but Ariya has it in both. She also has a brain condition and strain on both eyes, glaucoma. 

When the diagnosis was confirmed, her parents were, of course, asked a thousand questions. Stacey said that three months after the baby was born, they had an MRI. It came out normal. But on December 29 she had the first convulsions.”They will never forget that day. The family went to eat at Guadalest. We didn’t know what seizures were like in a baby. When we woke her up, we saw that something was wrong. She turned her head away and had small tics in her eyes. Emergencu services took them to the Callosa d’en Sarrià health centre, then on to the Vila hospital. They spent the night there. They were referred to the Dénia hospital and then to La Fe, Valencia. Ariya was admitted until January 14th undegoing many andvarious tests”.

In La Fe, doctors found a cocktail of medicines that must be given to Ariya to reduce the risk of new seizures, but those have caused hemiparesis (weakness) on the left side of her body.

It was a priority that Ariya undergo regular ophthalmology check-ups. In March, again at La Fe, they detected that she had “extremely high” intraocular pressure. An operation was a metter of urgency. “She could lose vision in both eyes,” said her mother. The intervention had to be carried out at the Sant Joan de Déu hospital in Barcelona. But at that point came the arrival of the coronavirus

“They prescribed us a lot of medication to lower his pressure. The whole family had been to clinics and hospitals. We contacted coronavirus! Ariya was given three antibiotics. She had a bad cough for six weeks. We were all pretty bad for six or seven weeks. The pediatrician from Benissa followed us up. She was wonderful.”

Finally, when the alarm was raised, they were able to go to Barcelona to have the operation. “This is the first operation of many that await her” Stacey warned. Her mother and grandmother take her to the Sant Joan de Déu hospital once a month. Her father has to stay working and taking care of her other two daughters. There she is treated with laser for facial angioma and ophthalmology tests are performed. They must return on September 18.

 “It is a huge expense. We don’t have help from the government. The Benissa City Council is moving. We do so need help trying new therapies”

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