Hello, my name is Luis Paulo and I'm the father of the little Sofia. I'm writing this blog on Hope For HH share a little of Sofia's HH story. I'm hoping this will help spread information about hypothalamic hamartomas and the Hope For HH organization and website.
Sofia suffered from bouts of laughter and crying since she was a baby. As time passed, we realized that this was not normal. We reached out to doctors who ordered several EEGs, but nothing appeared out of the normal. It wasn't until a detailed magnetic resonance image (MRI) identified the hamartoma on her hypothalamus, located on the right side of the third ventricle.
We had multiple appointments with neuro-pediatricians and neurosurgeons, but we still had no answers. When Sofia was just over 2.5 years old, things began to get worse. Through searching the internet we found Dr. Andre Palmini, a neuroscientist from Porto Alegre/RS, Brasil. Dr. Palmini met with us for a consultation and within was able to tell us that Sofia had a hypothalamic hamartoma (HH). During this appointment, he also shared information regarding a hospital in Paris, France that treated HH with a surgical intervention, that was achieving great results.
We decided we wanted to move forward with treatment and have begun planning our trip to the Paris hospital on February 3, 2019. Sofia's surgery is scheduled for February 13, 2019, and we are so thankful to God for helping us find Dr.Palmini and for his guidance. Sofia continues to be on medications for her seizures. The HH has impacted her cognitively and made learning and speech more difficult, but she's continuing to speak more and is a very intelligent little girl.
Thank you so much for letting us share Sofia and her story. We hope by sharing her story we will help others.