The syrup that keeps two-year-old Gaia alive is outrageously expensive – it costs five thousand złoty a day. What's more, you have to fly to the United States to get it, because the drug is still being tested in Europe.
Gaia started laughing again. – She stopped noticing us, her loved ones, her brother, so now every change we observe is a great joy for us and gives us hope – says Adam Starecki, Gaia's father.
The two-year-old was diagnosed with Rett Syndrome. A disease that gradually began to take away what Gaia had learned and locked the girl in her own body, without contact with the world.
The parents immediately started taking action, because there is a way to slow down the disease. This medicine is available in the United States. Gaja and her family flew to Houston. There are effects. – She interacts, wants to play. All of that was not there – says Adam Starecki.
They must maintain this for at least three years until the gene therapy being developed in the US becomes available.
– It is promising that the first results of these studies bring satisfactory and promising effects. More patients are being included, more girls – says Professor Magdalena Chrościńska-Krawczyk, head of the Pediatric Neurology Clinic at the University Children's Hospital in Lublin.
Therapy cannot be interrupted
The idea is that one injection will provide the body with the functions of the currently non-functioning gene. It will stop the disease. This means that the child must be in the best possible condition by that point. An expensive syrup gives the chance for this. The cost of a daily dose is five thousand złoty. So a huge sum is needed for three years.
It is hard for Gaia's parents to sleep peacefully when the funds collected so far are enough for a few months and the therapy cannot be interrupted. – The more we manage to fight for now, the greater our hope for a full recovery – says Adam Starecki.
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Gaja is undergoing intensive rehabilitation. – You have to be more than just a mom and dad. You have to be a physiotherapist, a dietician – lists Julia Starecka, Gaja's mother.
It will be a little easier when a clinic for patients with Rett syndrome is soon opened in Warsaw.
– Care for girls with Rett syndrome is spread all over Poland. It involves parents passing on information through the grapevine, who is worth going to, who is worth consulting – points out Michał Kasperowicz, a pediatric neurologist from the Department of Pediatric Neurology and Pediatrics.
Gaia's parents spent a year searching for an answer to why their child was suffering. When they found it, they fought to make her healthy. – We decided that we would win, Gaia also decided that she would win, so it will definitely be so – sums up Adam Starecki.
Main image source: TVN Facts