Category Archives: Blog

Paying it Forward

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For many years now, since 2005, Amy Delmege has crafted a special gift to all campers attending Camp Wonder. A pillow duck! I interviewed Amy this year at camp asking her how she got the idea and how she accomplishes this monumental task. She is paying it forward! Please Note: Campers usually need to bring…

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New Low Price for Kindle versions!

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Hello everyone, just a quick notice! The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com      If you don’t have a kindle, the APPS are FREE for…

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Insurance & EB

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There is a difference between HMOs and PPOs as per it concerns covering EB related supplies. For the most part, HMOs do not pay for any bandages or any wound care supplies. If they do it’s rare, although it’s been improving lately. Most HMO policies state that they do not cover “over the counter” items,…

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The Parent’s Marriage

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By Silvia Corradin From: Special Mommy Chronicles  (Unpublished Column from August 14, 2006)      Marriage in America is already a weak preposition, as the latest statistics show that 43% of all marriages end in divorce. Throw in the mix a child with a disability and a marriage that was hanging on by a thread will probably…

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How to find Individual State Programs

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These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…

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Jonathon’s Speech

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This speech was written by Jonathon Connolly and he read it at the State House for “Rare Disease day”. ****************************** Good Afternoon everyone: On August 7th 1999 I was born a healthy baby boy. 5 days later began the challenge of a lifetime. I was not officially diagnosed with EB until I was 3 months…

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The heart of research…finding a cure for EB

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By Christie Zink From her Blog: I Refuse EB *************************** Epidermolysis Bullosa…I remember the first time I ever came across those words.  I did not realize at the time that those words would impact me so profoundly.  It was late at night and I happened to see the link to a blog on a Facebook page that I had started…

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Kidowed

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Kidowed is an e-book available on Amazon.com about a mother who had two children afflicted with the fatal Junctional-Herlitz subtype of Epidermolysis Bullosa. Her story is one of tragedy and loss, but also hope, victories, and humor. The book was originally written as a journal, and has remained in that format. The author, Jessica Kenley,…

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Uncovering the pain…

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By Christie Zink From her Blog: This Little Light *************************** It has taken me some time for me to write this post.  I have sat down to write it multiple times, only to get back up because I found myself so full of emotion that I could not even find it within me to type.  There…

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