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 years and had to abandon my career many moons ago to take care of my son. Over the years EB took its toll and he was more and more in pain and less and less able to move, let alone actually do things. I had no choice but take care and love him as much as I could. I am in the process of looking for a new career at the moment, please pray f ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email Nicky was recently 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 and surely more to come! Thank you for your support ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 coping and celebrating our amazing kids. Enjoy and I hope it’s helpful! Thank you for watching ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 was born with it, basically his body does not make a protein called “Collagen Type VII” which is responsible for ho ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 aspects of coping and celebrating our amazing kids. Enjoy and I hope it’s helpful! Thank you for watching ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 mere week later I was told there was no heartbeat and on March 1st I delivered my angel, stillborn. Every year at the end of February the tears flow. It’s not that I haven’t dealt with it or accepted it. I cry because he was my son and I miss everything we should have gone through together. My li ..read more

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Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email A BIG *Thank You* to Grey Genetics for the Interview ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 name it, and when everyone said it was going to be OK, we switched. Now, I know it would take a while to get everything set back up for Nicky. I just… I don’t know. I am so sick and tired of this “system”. Nothing so far has been approved. NOTHING. It’s been a month. I even had to ..read more

Facebook Twitter Pinterest Reddit LinkedIn Tumblr Email 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 watching ..read more