Managing Overstimulation as a ParentOverstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be triggered by the constant sounds, sights, and activities...reactionscomments
Finding Your Advocacy Voice: Embracing a Safe CommunityAs caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and driving positive change in the healthcare landscape. It's...reactions4comments
Balancing Work and Caregiving: Parenting Kids With Special NeedsEvery morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes before it's time to wake up and do...reactionscomments
The Importance of Connecting With Mentors as a CaregiverCaregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack of awareness about the condition can make the...reactions5comments
Who Am I? A Journey About IdentityNot long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment...reactions3comments
Navigating Overnight School Trips When Your Child Has a Rare DiseaseAs a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was a challenge. However, we successfully navigated this journey...reactions2comments
Early Intervention Gave Me HopeWhen I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...reactions1comment
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big...reactions3comments
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for CollegeI want to talk to you about something close to my heart – preparing your high school child living with a rare disease for college. In the words of Robin...reactions5comments
Caring for a Child With a Rare Disease: Conventional Versus Specialized EducationSending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope to heartache. This decision, often fraught with complexities...reactions3comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a MissionOur rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but the doctor reassured us each time we asked...reactions1comment
Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with a rare disease. Complex situations and unique challenges...reactionscomments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done –...reactions5comments
Fertility Preservation for Rare Disease WarriorsIn a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden – the preservation of their child's fertility. As...reactionscomments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story filled with love, resilience, and the transformative power...reactions3comments
Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love, and unwavering dedication to make sure that their...reactionscomments
Caring for a Child With a Rare Disease: Vacations? What Are They?As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of us with medically complex children, like me, the...reactions1comment
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the HomeEvery day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make sacrifices to ensure that our children get what...reactionscomments
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 often surprises me and allows me to find...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 hard. The general public is not well-educated on...reactionscomments
