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... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Elle Cole3 min readBookmark for laterReactions0reactionsComments2 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments1 comments
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... By Elle Cole2 min readBookmark for laterReactions0reactionsComments3 comments
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... By Elle Cole5 min readBookmark for laterReactions0reactionsComments5 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments3 comments
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... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments1 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
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 –... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments5 comments
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... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Elle Cole6 min readBookmark for laterReactions0reactionsComments3 comments
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... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments0 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments1 comments
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... By Alex Gaudlap4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
How to Care for Someone With Congenital Adrenal HyperplasiaCaring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Parental Partnership: Supporting Families With a Child Affected by a Rare DiseaseWhen I became a mother at 26 years old and my husband a father at 27 years old, we learned that the future ahead of us would be characterized by... By Elle Cole4 min readBookmark for laterReactions0reactionsComments0 comments
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 a rare disease. My middle is a high-energy... By Alex Gaudlap4 min readBookmark for laterReactions0reactionsComments0 comments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to ResilienceBeing a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my daughter gave me a sense of purpose and... By Elle Cole4 min readBookmark for laterReactions0reactionsComments0 comments