A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
I want to thank everyone for their love and support. Since Nicky’s passing on December 5th I’ve been in a kind of a fog. It’s going to take sometime to re-gain some direction in my life as I feel lost and confused. I’ve been a full time caregiver for 25...
Nicky was filmed by Barcroft TV (Truly) for one of their videos about people born with different conditions and disorders. Here’s his! Nicky is not the first person with Epidermolysis Bullosa to be featured, here’s the other brave EBers that have been featured on this program. There are many others...
New episode of Butterfly Talk ready to view! If you want to be able to help a friend or family member that has lost a child, I hope my super-important tips can help you! Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of...
Today is Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on our lives. There are 300 million people worldwide living with a rare disease, and approximately 25,000 people in the United States living with Epidermolysis Bullosa (EB). Nicky has the most severe form, called Generalized Severe Recessive Dystrophic form (RDEB-sev gen). He...
New episode of Butterfly Talk ready to view! If you want to be able to help a friend or family member that has a child with special needs, I hope my super-important tips can help you! Butterfly Talk is a YouTube show where I talk mom to mom about different...
The last week of February is coming up, and it’s always a somber time for me. 26 years ago I was 30 years old and nearly 9 months pregnant. I was so happy!! The crib was ready, the diapers bought, and I couldn’t wait to meet my little treasure. A...
A BIG *Thank You* to Grey Genetics for the Interview!!! Post Views: 1,827
This past fall, seeing how our Health Insurance Premium was going to be going up to nearly $1,000 a month (which is crazy), we shopped around for a similar plan but that could at least save us a little money in the long run. We compared, called, sent emails, you...
New episode of Butterfly Talk ready to view! Today I am sharing 11 Helpful Tips for NEW Special Needs Parents! Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for...
My son has made me a better person. No lie, I used to be the girl who slammed doors and threw things. It’s quite embarrassing to think about that now, but having a child with special needs has taught me to have an immense amount of patience. Nicky has taught...
New episode of Butterfly Talk ready to view! Today I am sharing what are my favorite “Special Needs Parenting” Movies, plus I share which movies are available to watch specifically about EB. Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and...
A couple of weeks ago my family got devastating news. My sister, her husband, and our 88 year old aunt all got diagnosed with COVID-19. We do not know how any of them got it, we are thinking perhaps it was from my aunt’s dentist that was asymptomatic, but it...
New episode of Butterfly Talk ready to view! It’s EB Awareness Week! My guest today is Jodie Gillon, who is the VP of Patient Advocacy and Clinical Affairs for Abeona Therapeutics and EB-101. To Enroll in EB-101: https://www.abeonatherapeutics.com/cl… Butterfly Talk is a YouTube show where I talk mom to mom...
