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 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
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 Rare Disease Child: 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
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 – especially if you have a medically complex... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
Embracing Diverse Coping Mechanisms as Parent CaregiversAs a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound learning experiences. One of the most enlightening aspects... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments
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 the hours fighting with insurance to get therapies... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
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 Preference Program is a Medicaid-based program that allows... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments0 comments
Embracing Mindfulness: 31 Affirmations for Rare Disease CaregiversReflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought I would tread. It was the year... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments
Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there was an obvious difference between my son and... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments0 comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 PlanAs a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and school. As we prepare for her first high... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments
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 busy. Modifying everyday activities based on your child's... By Alex Gaudlap4 min readBookmark for laterReactions0reactionsComments0 comments
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 up quicker than most. Motherly instincts, formed over... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
Keeping Your Family Connected When Raising a Child With a Rare DiseaseRaising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through our entire family, influencing relationships and our day-to-day... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 comments