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...Reactions0reactionsComments1 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...Reactions0reactionsComments3 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...Reactions0reactionsComments1 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...Reactions0reactionsComments0 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 –...Reactions0reactionsComments5 comments
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 found a crucial need to pause and refresh...Reactions0reactionsComments5 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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 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...Reactions0reactionsComments0 comments
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 lost in one way or another? I often...Reactions0reactionsComments1 comments
'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 way. And you believe them. Yet, for some...Reactions0reactionsComments0 comments
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, and joys no one understands unless they live...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
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 of the year. Unfortunately, because of circumstances with...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
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 are extremely tired. Because what choice do I...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
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. At first, I was hesitant to join because...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
3 Ways to Help Professionals Understand Your Rare DiseaseAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis to new families. I feel that they believe...Reactions0reactionsComments0 comments
