As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share my story of ‘Why’ I was driven to join the organization and help others in the Hope For HH Community.
‘This is My Why’
I was 35 weeks pregnant with a healthy baby boy when my husband and I got the news that the ultrasound technician noticed ventriculomegaly (dilated ventricles in his brain). When my son was born, he had a scheduled MRI at just 3 weeks old where they found a hypothalamic mass. After hearing this news, my world stopped for a second. The neurologist said that he believed it was something extremely rare called a hypothalamic hamartoma (HH). He was very honest and told us that any information we were trying to seek may or may not be on the internet but he was not too familiar with these masses. He informed us about the gelastic seizures, precocious puberty and that Jaxon may have some delays but we would have to just wait.
As time went on Jaxon’s mass kept increasing in size and there was also a finding in his pineal gland. After the team had a conference meeting, it was decided to perform a brain biopsy on the hypothalamic mass to confirm it was a hypothalamic hamartoma. Jaxon was just 11 months old during this time and unfortunately was diagnosed with bacterial meningitis just 9 days post-op. Jaxon is now 2 and since that time, he has been admitted multiple times for testing including blood draws, EEG’s, sedated MRI’s, rapid MRI’s, ultrasounds, water deprivation tests, and many others. He was just recently diagnosed with autism so now he has started receiving ABA services as well as early intervention that has been helping since he was an infant.
Jaxon has gone through many struggles in his past 2 years that not everyone sees. My goal is to raise awareness for hypothalamic hamartoma patients. This will bring knowledge to the people who are not familiar with this diagnosis. I would like to help bring more research to H.H and hopefully, one day save a patient from having the number of tests that my son has gone through. Last but certainly not least, I want to make sure that any family who is going through this journey knows that they are not alone. I would love to help anyone who is struggling with this diagnosis and to help them process it all as best as I can.
Although this road is not easy, I would not change it. In our house, we celebrate the little victories because that’s what matters the most to us. There are brighter days and if we continue to work together and stand together, I believe people will become more aware and knowledgeable of this condition!
Want to make a difference? Join our Team.
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.