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 a severe case of bacterial meningitis. He was diagnosed on the autism spectrum at only 1.5 years old. But they are still currently having difficulty getting an accurate diagnosis of gelastic seizures. Jaxon has laughing “episodes” sporadically but sometimes as many as 5-10 per day. He does experience significant rage outbursts and is currently non-verbal but most importantly he is one of the most loving kids!
Michelle was told by physicians to reach out to Hope for Hypothalamic Hamartomas organization when he first got diagnosed to seek support. To her surprise, this group of caregivers, Mom’s and Dad’s and even people living with HH have provided her more information/advice for this rare syndrome than doctors have. Michelle is determined to bring more awareness, research and ultimately prevent any other family from undergoing what her son has had to endure.
Michelle currently stays at home with her children to provide Jaxon all of the support he needs in hopes to set him up for success. She dreams one day of becoming an ultrasound technician or MRI technician to support medically complex children and children on the autism spectrum to be comfortable during unsure times.