Brandi Hurtubise is a full-time caregiver to her daughter Samantha who was born in 2016 with Congenital Cytomeglovirus. As a result Samantha has spastic quad cerebral palsy, epilepsy, hearing loss, cortical vision impairment and microcephaly. She is non-mobile, non-verbal, and receives the majority of her schooling and services in their home in Buffalo, NY. Brandi is also a Mom to Sam's older and neurotypical brother MJ.
Congenital Cytomeglovirus (CMV) is the most common viral infection infants in the US are born with and unfortunately there is very little awareness despite how devastating outcomes can be. CMV during pregnancy can be avoided by not sharing food and drinks with toddlers, avoiding kissing toddlers on the mouth, and washing your hands after every diaper change.
Prior to Sam's birth in 2016, she worked full -time in insurance. She left the workforce after Sam had a G-Tube placed in 2018. Over the last few years, she has worked with the National CMV Foundation; fundraising and raising awareness for CMV. She also recently started to work with a wonderful group of individuals in Western NY to open up a non-profit organization that provides adapted bikes to individuals with disabilities ( Trendy Trikes / AMBUCS of WNY).
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.
Crystal Polk: Adoption, Time Saving Tips, and Support
Debbie Weiss: Lifelong Caregiving, Grieving, and Overcoming Obstacles
Jessica Patay: Special Needs, Community, and Making A Difference
Robert Freiri: Future Options, Pressing Issues, and Never Giving Up on our Children
Eric Jorgensen: Searching for Hope in a Difficult Reality
Eric Alber: Flexible income options, feeling your feelings, and the new normal.
Lyn VanTol : Parent Caregiver & Advocate for College Inclusive Experiences.
Kelli Stuart - Author, Parent Caregiver, and Cancer Survivor.
Crystal Morrison: Using Science to Create Solutions for Disability, Trauma, and Invisible Needs.
Michelle Crawford - solo caregiving, survival mode, and feeling trapped.
Crystal Paine: adoption through foster care, time saving hacks, and family team work.
Kristin Pattison - Recovering autism, the staffing crisis and soothing versus self care.
Jillian Benfield: In utero diagnosis & changing the way we think about disability.
Tonya Andrews : sleep deprivation, playing the med game, & why we must address the caregiver crisis.
Kassandra Lambert - advocate for predictable time off, restorative self care & fundraising for needs
Ron Sandison - Author, Autism, & Advocate.
Mary Barbera - ABA, Preparing for the Future, & Turning Autism Around
Amy McCoy - autism advocate, children’s book author, & how laughter is the best medicine.
Melanie Oates: Single parent, long term respite, and choosing caregiving over a career.
Create your
podcast in
minutes
It is Free
Dr. Laura Call of the Day
Focus on the Family with Jim Daly
Calm Parenting Podcast
The Turn of the Screw
The Story of Mankind
Good Inside with Dr. Becky
The 1000 Hours Outside Podcast