Benjamin's Journey with Hunter Syndrome

Hi, my name is Cathy Chernega. I am Megan Selser's Mother and Benjamin's Grandmother.

As many of you know, we were blessed with a beautiful Grandson, Benjamin, in December of 2023. We were fortunate enough to be able to travel and be close by for his birth and first few months of life. We were so grateful to have our new grandson born happy, healthy, and perfect in every way.

When Benjamin was about 7 weeks old, my daughter and son-in-law received a phone call informing them that one of the tests Benjamin had, suggested he had what is called “Hunter Syndrome”. Unfortunately, after repeated testing this diagnosis was confirmed to be true.

Hunter Syndrome is an extremely rare and life-limiting genetic condition with no cure.

Getting this type of news is just devastating for all of us, knowing everything Benjamin will now have to endure. The only treatment available requires weekly infusions in the hospital for the rest of his life. The treatment is not curative, but will help him to live as normal and healthy a life as possible.

That being said, his medical needs, and especially his treatments, are extremely expensive. Even with their insurance, the cost will be overwhelming for our daughter and son-in-law. It has only been a little over two weeks since receiving this news, and I have seen first-hand how overwhelming it already is.

I don’t know that much about fundraising, but with their help and blessing, they have allowed me to start a Go Fund Me on their behalf. No donation is too small, and I would be so grateful for any relief this could provide for their family.

While Benjamin’s needs will likely not go away in the years to come, I am hoping this will help them in the short-term while they investigate what resources are available to their family and Benjamin.

Please pray for Ben and our entire family as we work to ensure Ben lives the best life that he possibly can.

Thank you