Life as a Rare Disease Parent: My Motherhood JourneyMy motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly...reactions3comments
Medicaid Needs to Do Better for Rare Patients and FamiliesI recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning...reactionscomments
5 Rare Life Challenges: A Caregiver PerspectiveAs a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...reactionscomments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-careAs an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease CaregiverMy 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with...reactionscomments
Why Joining Your Rare Disease Community Is ImportantWhen my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families...reactionscomments
Working Remotely as a CaregiverWork is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
What It Means to Celebrate Moments as a Rare Disease FamilyOn my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
My Experience With New Jersey's Personal Preference ProgramHave you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
No Family Is the Same: A Caregiving Parent Perspective on DivorceAs a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your ChildIf you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Parenting and Rare Disease: A Journey Through Grief and AcceptanceThe day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral PalsyThe best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
Being the Change: How My Advocacy StartedI remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
