Sofia’s disease is an extraordinary challenge for her family, from all perspectives: psycological, social, logistic, financial. But.. “what doesn’t kill you makes you stronger”, and so it was for Sofia’s parents and for the whole family.
What to most may have seemed a tragedy, turned into an incredible source of inspiration and motivation, everyday renewed by the enthousiastic and innocent smiles of Sofia.
This is where “One day Sofia…” found its roots.
Being a parent of a Rett Syndrome girl is frustrating. You have to chase, get and then face the diagnosis, at first, and that is a challenge by itself. But once you know it is Rett Syndrome, you still don’t know the monster you’ll be dealing with. You can read, you can be rationally prepared, but intimately… no parent can be ready for Rett Syndrome.
The disease silently proceeds in its inescapable progression, day after day, month after month. Rationally you know it and you expect it. But emotionally, you feel lost. Powerless, incapable, useless, as you are left with no means to confront the disease, to slow it down, to prevent its devastating progression. No matter how much commitment you will put in arranging for physiotherapy, hydrotherapy, horse-therapy, occupational therapy, speech therapy, no matter how carefully you will plan you doughter’s daily diet, how meticolousely you will balance the abnormous amounts of drugs needed to help sleeping, avoid mood swings, fight reduced intestinaly motility, prevent seizures, reduce oxidative stress, etc. etc… Rett Syndrome will always be there. And every day of your life you will wonder: what will she lose next?
We, Sofia’s parents, felt and feel like this… However, thanks to the support of our family and friends, our reaction to such frustration was positive. If we can’t control Rett Syndrome, let’s help in defeating Rett Syndrome! We therefore started reading, studying and we progressively gained awareness about the current progress of scientific research towards a cure for Rett Syndrome… And we found that what to many may seem just parents’ desperate, emotional hope, could be turned into solid, grounded, rational expectations for a cure.
“One day Sofia…” started as a facebook page, where we posted relevant news, glimpses of Sofia’s daily life and achievements and, mostly, infos about our awareness and fundraising initiatives to support scientific research to cure Rett Syndrome. The response was overwhelming, and in a matter of weeks the page gained more than 1,000 followers. Relatives, friends, unknown people from all over the world approached us for information, offering to support, willing to donate.
© 2024 — Website: One day Sofia... (Onlus) - Photographs: Terhi Karppinen
