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!!! Post Views: 549Read More →
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! Post Views: 425Read More →
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 holding the layers of skin together. Without this protein his skin tears off and blisters extremely easily leaving behind 2nd degree burn-like wounds which need to be bandaged to allow healing. RDEB is rare. according to the NIH there are only about 1100 cases in the United States, and that have Nicky’s subtype (Generalized Severe) is somewhere between 150-250 nationwide in the United States. How is Nicky doing?Unfortunately the areas of constant rubbing or with joints, such as knees, armpits,Read More →
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! Post Views: 370Read More →
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 life was forever changed by his death. After Alex died we hat to go through the obscene ritual of shipping for the right box in which to bury him. So, instead of a cute Disney Babies crib, he got a blue box toRead More →
A BIG *Thank You* to Grey Genetics for the Interview!!! Post Views: 286Read More →
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 shell out nearly $200 for medication that is usually covered just because of fiddly paperwork-and Nicky could not wait for “paperwork”. Did I mention that both the Medical Group and the Insurance have REFUSED to pay for bandages and any woundRead More →
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! Post Views: 259Read More →