I still remember a Saturday, Christmas Eve. I was in a restaurant having lunch with my father and talking about many things. It was on that day that my father began to tell me the story of The Snow Foundation, the foundation that conquered my heart. Well then, he began: “Daughter, I found on the internet the story of a very nice girl. She is 10 years old and has Wolfram Syndrome, so her parents have set up a foundation in the United States to raise funds for medical research. “Each sentence my father spoke got me more and more interested.” Besides, she’s got pretty much the same symptoms as you! We could try to get in touch with her mother “. At that time, my mind was already somewhere else with a thousand thoughts and ideas. Then, my father added: “Daughter, she has already talked about the disease in various events in different places of the world, raising funds for the foundation.” My admiration for her could no longer be measured. Soon after we got home, I joined The Snow Foundation website, which is the world’s largest organization to support medical research for the disease! It was the first time I read about my illness and about other patients. Actually, it messed a lot with my head, I needed some time to process all those new pieces of information. Sometime later, I sent an email to the founder Stephanie Snow Gabel. I got a reply the same day, which surprised me a lot:
My name is Rafaela Ungaretti, I’m 18 years old and I’m Brazilian. Only a few months ago, I found out I am a patient of Wolfram Syndrome. After researching for a long time on the WS, my parents found The Snow Foundation on the internet.
I was very impressed and eager to know more about the foundation, its history and also Raquel’s story. I also have diabetes, optic nerve atrophy and hearing loss. In early May, I am going to St. Louis to learn more about a research that has been developed to help fight the evolution of the Syndrome. So, during the trip, I would like to meet you and little Rachel.
Looking forward to your return,
What a wonderful surprise when I read your email this morning. Thank you for the beautiful words about our Foundation. I can assure you that we are doing everything possible to get a medicine for you and everyone suffering from this disorder.
Rachel and I would love to meet with you when you come to St. Louis, so please let us know the time of the meeting and we’ll be there!
I am sorry that you are a patient of Wolfram Syndrome, but I promise you that I will fight for you and all who suffer until we find the cure for this disease.
P.S.: I hope to visit Brazil soon.
I do not need to tell you how much this email touched me and my parents. Yes, there are such good people, they are going through the same difficulties and they are struggling daily for this cause. This is the Snow Foundation. As I write, my eyes fill with tears. It is not just a foundation, but a family.
It was where I found out that I do not have to be afraid of who I am and that, yes, there is health, happiness and love walking alongside with this whole struggle.
I will never stop thanking Stephanie and doctor Fumi, who embrace the Snow Foundation and do their best and the impossible so that all the victims of Wolfram can have hope and smile every day. Please visit The Snow Foundation website and learn more about the story of little Rachel.