Kristy served as a Hope for HH board member from 2021 -2022
Angela is mother to a 13 year old child who was diagnosed with HH at age 3. After two laser ablation surgeries through Texas Children’s Hospital and the ketogenic diet for epilepsy through Johns Hopkins Hospital, her child became seizure free at age 5. She was so thankful for all the support of the HH community,…
In 2005, Erica’s fourteen month old daughter, Grace, began to show the first signs of having a hypothalamic hamartoma when her pediatrician diagnosed her with precocious puberty after finding blood in her diaper. As a result of discovering the precocious puberty many follow up tests were conducted and eventually a MRI confirmed the rare brain…
Lisa’s son CJ was diagnosed with an HH in 1997, when he was just 3 months old. The process of getting doctors to listen and ultimately getting a correct diagnosis at that time was extremely challenging. Lisa and her family traveled to Royal Children’s Hospital in Melbourne Australia for surgery, as there were no HH…
Kimberly is the proud mother of three children. Her middle child, Colin, was born with an extra pinky finger, some abnormal toe formations, and an “unusual cry”. At 4 months old Colin was diagnosed with a kidney condition, at 11 months he was diagnosed with HH then shortly after he was diagnosed with Pallister-Hall syndrome.…
Kathy served as a Hope for HH board member from 2015-2022
Emma’s son Charlie was diagnosed with HH when he was 8, after years of misdiagnoses. As a result of her experience she joined Hope for HH as it was set up and has worked with the other Directors to support patients and caregivers, to spread awareness amongst the medical profession and to find a cure…
Michelle is a proud mother of three young children. Her son, Jaxon was first noticed to have some abnormalities in utero. Jaxon’s accurate diagnosis was extremely difficult to get. He ultimately got diagnosed when he was just 4 months old. However, he did have to undergo 2 brain biopsies, 30+ lab draws, 2 spinal taps and…