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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 about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 158Read More →

It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder. Here’s 10 things this EB mom wants you to know… 1. Yes, it might looks like we have it all under control, and most likely it is. That doesn’t mean we wouldn’t like some help. Even if that just means a kind word. We appreciate those more than you know! 2. Taking Nicky anywhere is very hard. We are often invited to places or events that are hard to get to for him. We wish people would visit us more, is all. I understand this is hard with COVID, but this was true even beforehand and will be true after. 3. We find ways to be happy. It may not be what looks like happiness to many, but we’ve figuredRead More →

New episode of Butterfly Talk ready to view! October 15th is Pregnancy and Infant Loss Awareness Day (as a whole, the month of October is also). Why this day is so important to me and why it’s linked to EB Awareness. My story and several tips on coping. 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: 125Read More →

New episode of Butterfly Talk ready to view! In this episode I encourage all Mamas out there to take care of yourselves!! This includes Nutrition, Exercise, Sleep, Pamper Yourself and Your Mental health is also super-important!!! 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: 123Read More →

Just yesterday Model/Author Chrissy Teigen posted something on her Instagram account that blew me away. Her loss. Her Pregnancy Loss. The pictures were so devastating to look at, not because of the images per se, but for the memories they brought back in my mind from my loss, long ago. I don’t think celebrities really know how important it is to share their grief with all of us. Grief sucks. To lose a baby sucks. We, as humans, have a need to not feel alone. I noticed that in the past 24 hours since Chrissy’s loss, a few celebrities have came forward, such as Kate Beckinsale, and shared their loss as well. I have never been so proud and so touched. There was a point that I started sobbing so hard, I felt compelled to thank Chrissy for posting about her loss because when I lost Alex in March 1995,Read More →

New episode of Butterfly Talk ready to view! In this episode I talk about the Healing Power of Humor. I’ve used it a lot with Nicky and also my husband. We try to laugh as much as we can. It helps!! 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: 138Read More →

The passing of Ruth Bader Ginsburg got me blogging again. She was one of those pioneers for women that will be hard to replace, most especially on the Supreme Court. For what it seems like right now, her possible replacement is against everything she was for, which is sobering. It’s sobering to me in particular because I know how much RBG changed our country, and for the better. I honestly want a supreme court that gives a crap about Health Care, not reverse Roe. Reversing Roe will not stop abortions, it will only make them unsafe. For those that have seen episodes of “Call the Midwife” where women would risk their life for an abortion, you know that’s the truth. Women in devastating situations WILL die. Period.As per Health Care… I guess it must be easy to knock the “medicare for all” when all your children are healthy and youRead More →

New episode of Butterfly Talk ready to view! In this episode I talk about the bandages and miscellaneous products that we use to take care of Nicky’s wounds and well-being.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: 310Read More →