Haley was born during the Blizzard of ’97 in Denver. Three days before birth, doctors found a grape sized tumor in the left ventricle of her heart and suspected she had Tuberous Sclerosis Complex. Having no other symptoms at birth, her parents were sent home with the warning to “watch out for seizures”. They didn’t have to wait long as Haley began having infantile spasms at 2 1/2 months of age. She’s never really been seizure free since then.
She’s failed on more than a dozen AED’s. Her parents pushed aggressively – she was the youngest kiddo Children’s had ever put on the keto diet (a day after her 1st birthday), she was the youngest kid in Denver to get the VNS (at age 3), she was the 1st kid that the neurosurgery team at Children’s agreed to do tuber resection on based on new (at the time) diagnostics performed at Detroit Children’s using serotonin up takes and PET scans to locate “hot” tubers, and she underwent two separate 3 stage surgical resections at NYU when she was 9.
She’s been a pioneer – getting Vigabatrin from the Bahamas before it was FDA approved -testing the efficacy of Rapamycin for severely impacted kids with TSC -and now being the first kiddo with TSC taking Charlottes Web.
So far, Haley blazing trails has helped so many kids being born now, we are hopeful that CBD will help Haley too!! We hope that Haley will show development in any and all areas of her life on CW…