recessive dystrophic epidermolysis bullosa

April 24, 2020

Yes, RDEB Gets Worse With Age.

RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does. I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all...

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November 22, 2019

Nicky Makes The News :-)

Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian...

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November 7, 2019

Epidermolysis Bullosa is Hard

I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go...

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August 16, 2019

Where is the cure?

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me...

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July 23, 2019

Nicky’s Life Part 72

October 1999 – Nicky’s first official visit to the Pumpkin Patch! He was almost 3 years old. More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,972

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July 10, 2019

6 Months to Normal

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6...

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April 11, 2019

Nicky’s Life Part 71

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat,...

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March 12, 2019

Nicky’s G-Tube Ordeal

Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube...

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November 2, 2018

Life of an EB Mom

My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That...

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January 27, 2017

Success Quote

Success is a word measured differently with kids like Nicky. I consider a “great” and “successful” day, when we’ve gotten through a day without choking, vomiting or screaming in pain, or when we can spend a few moments laughing. ~Silvia Corradin   Post Views: 2,511

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January 26, 2017

Frazzled

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but...

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