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...reactionscomments
A Caregiver's Guide to Explaining a Rare Disease DiagnosisAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...reactionscomments
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of...reactions2comments
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...reactionscomments
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...reactions3comments
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...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
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...reactionscomments
Shining a Light on Rare DiseasesAs a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal...reactionscomments
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...reactionscomments
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...reactions1comment
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...reactions1comment
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...reactionscomments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything...reactions5comments
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...reactions1comment
Caregiving, Advocacy, and the Drive to Keep GoingIf you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
'It Takes a Village...' Building a Supportive Rare Disease VillageWhen you become a parent, people say you will have a village that will be there for you every step of the...reactionscomments
Paving the Way for ChangeThe journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to...reactionscomments
