Hello HH community, my name is Calebe, I am 9 years old. I’m from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH).
I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I suffered from the symptoms of this disease. I have always had seizures, but it took time to determine the cause for these seizures. Although my parents took me to several neurologists, the dcotors were unable to provide any diagnosis what I truly had.
During this time, I was prescribed several types of medications to stop the seizures and none of them had the desired effect, that is, they could not stop the seizures. Then, last year, my parents took me to São Paulo, and there, after being evaluated by a board of neurologists and after an MRI with the proper protocol including the hypothalamus, I was finally diagnosed. Since then, my parents have researched and found that there is an Endoscopic Surgery available in Paris, France. My family is currently raising the funds to take me there to perform this surgery and try to get rid of the crisis in the gelastic period. I have not yet been able to learn to read and write, as the HH has affected my cognition. My doctor, Dr. André Palmini, has sent me to this treatment and has accompanied me closely.
We will probably go to France in May of this year and hope everything with surgery goes well. Our hope is I can be cured as I have many dreams and I will fight to achieve them. Trust me the HH will not stop me.
My family has given me all the love and support needed. My father John is my example, he took care of me during the time I did several tests to get the diagnosis. My mother gives me lots of love. And my brothers Noemia and John Filho hug me and support me every day.
I want you to know my story and hope for my cure!