We are so happy to announce Laurel Gallant has joined Hope for HH as a volunteer on the Hope for Hypothalamic Hamartoma Information committee.
A Little About Laurel:
In the medical world, your life can change in an instant. I want to help other Hope for Hypothalamic Hamartomas clients the way our family was helped when our world suddenly and drastically changed.
My older son Wyatt’s diagnosis of Hypothalamic Hamartoma Syndrome came on top of other diagnoses that have made his life fairly complex. At a young age he had his first major seizures. With no history of familial seizure disorders or serious head injury in childhood, it didn’t make sense at the time. We got him tested and he was diagnosed with epilepsy – unexplained – with no particular focal area, no real triggers or ability to predict them, and with odd behavior alongside them, we got no answers. He had “rage attacks” come out of nowhere, intense sleep disturbances, and a lot of laughing in his sleep. Anti-epilepsy medicines helped keep the major seizures under control.
At age 4, his neurologist asked about an MRI to see if we could find out if there was a physical reason in the brain for his seizures – a deformity in growth, a brain injury from his hypoxic preemie birth (he was triple-nuchal and was born by emergency C-section), or scar tissue from an injury when he was younger. He wasn’t able to stay still long enough for an MRI and would need a general anesthetic, so as his seizures were mostly under control (or so we thought) we declined at that time as there didn’t seem to be an urgent need. He went to Pre-K and Kindergarten with as many versions of assistance that the public school and health systems in Canada could provide.
When we found out we were moving to the USA for my husband’s work, we went ahead with the MRI and what they found was a shock, to say the least. We were lucky to have found a Neurologist who had heard of a Hypothalamic Hamartoma. With a 1 in 200,000 people occurrence, they said it is rare and not well-known even in that specialty.
We were referred to Dr. Jacobs-Levan in Calgary and her team at the Alberta Children’s Hospital. We went through a few conference calls and some very sober discussions at home and with family. They say hindsight is 20/20, and in our case, this was definitely true. This explained the odd behaviors in Wyatt’s life. With the information we were given, and the likelihood of a difficult future if the tumor was not addressed, we made the difficult decision to go ahead with LITT (Laser Interstitial Thermal Therapy) surgery.
Wyatt’s surgery left him with many complications – not unheard of, but more than anticipated. We moved to Tennessee, USA about 6 months after surgery, and his post-surgical care is now handled by Vanderbilt in Nashville. We have found a large support base here in TN, and Wyatt is moving through his “new normal” well. It is not a life without trials, but it is life and that’s something worth celebrating. Every moment we get with our loved ones needs to be cherished. We are thankful to be under excellent medical care here in the US, and thankful to Hope for Hypothalamic Hamartomas for supporting and guiding us through the journey.
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.