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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate diagnosis. Once you received your diagnosis, perhaps your...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
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 different, I think many of us would agree...Reactions0reactionsComments0 comments
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 me to get through the day. I feel...Reactions0reactionsComments0 comments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral PalsyThe best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people I have met. The ones that, even on...Reactions0reactionsComments0 comments
Being the Change: How My Advocacy StartedI remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on PubMed, and said that another family had set...Reactions0reactionsComments0 comments
Finding Joy in the Rare LifeIt is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...Reactions0reactionsComments2 comments
No Family Is the Same: A Caregiving Parent Perspective on DivorceAs a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...Reactions0reactionsComments0 comments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a...Reactions0reactionsComments3 comments
