HH Community

Although I almost always write about quilting or machine embroidery, today is a story about how small the world community of families dealing with hypothalamic hamartoma (HH) actually is and how it transcends location and language. It truly is about one family helping another and everyone working together to raise these beautiful children.

Now we have Facebook and other social media ways to keep in touch and support each other. When Ezri was diagnosed there was a Yahoo group and Youtube. Even though we were not always aware that Ezri’s behaviour was actually seizure activity, we made many videos of her and shared them on YouTube.

My daughter received an email one day from a mother in Italy who had seen Ezri’s YouTube videos. Her child was having the same gelastic (laughing) and dacrystic (crying) seizures. The two mothers corresponded with each other, and the little boy in Italy was diagnosed with a giant HH very similar to Ezri’s. However, there was no surgeon in Italy who had experience with the surgery needed to remove the HH. My daughter talked with our surgeon and connected the two. Our surgeon was willing to volunteer his time and travel to perform or assist with the surgery in Italy. Then our surgeon in the US, who knew a surgeon in Italy, worked with the medical system in Italy to make arrangements to go there and assist with the surgery. It is always difficult to work out details for specialized services in other countries because of their nationalized health system and the limitations of allowed services. In this case, it took negotiations all the way to the top government officials in Italy. But all of the surgeons persisted until the day arrived and the little boy had his surgery.

This is just one of many stories about how our website and social media allows our world community to work together to help these children. Parents feel so alone when their children have these unusual seizure symptoms and  begin to have cognitive delay. Having another parent who can say, I know what that is, this is how it can be treated, and these are the doctors that can help you changes the lives of these children and their families.

Ezri reading to Owen
Ezri reading to her little brother
 
 

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