HIE is tricky. There is a vast spectrum of outcomes, no two injuries present that same way, and for many, you won’t know how HIE fully affects a child until they are much older because of how brains develop. For some, it will be obvious in the first few months, for others, it may take years until they reach school […]
There’s a famous poem that circulates often within the special needs community called “Welcome to Holland”. Many of our families find solace in that poem, and many do not, and a few have created their own. Here’s Nick Burton’s version, “Welcome to the Island”. When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You […]
HIE (Hypoxic Ischemic Encephalopathy) is one of the leading causes of Infantile Spasms, a rare but potentially catastrophic form of epilepsy. In 2019, Hope for HIE was invited to join the Infantile Spasms Action Network to collaborate with other patient groups, researchers and clinicians to move forward research and awareness so patient populations can be educated on what IS looks like and […]
In 2018, a member of Hope for HIE’s community connected our organization to TREND Community, a company that was started by two moms who had originally connected through a Facebook group dedicated to a specific diagnosis each of their children shared. Over the last several years, these two moms saw the qualitative data that was shared about the condition and was […]
Seizures have been a concern for much of Lucy’s life. Initially, she was weaned off seizure medication before her first birthday when the seizures she had in the NICU hadn’t returned. That was until one day when then-two-year-old Lucy woke up and her parents knew something wasn’t right, later learning the seizures had returned. In the three years since, the […]
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