News Update :
Wednesday, August 6, 2014

Butterfly Wings


You know that parenting method that encourages you to let your child “cry it out?”  It can be instrumental in getting an infant to sleep through the night, or learn to self-soothe, rather than responding to every twitch and whimper.  Maybe you used it with your kids, maybe not.  Either way, it was an OPTION.

But, what if you had to let your child cry it out?  What if the very touch that is intended to soothe, is torture?  What if every snuggle, every swaddle, every diaper change, feeding or nose wipe caused unimaginable pain?

In May 2014, a beautiful baby boy was born.  Within hours of Nicolas’ birth, his parents and medical team realized he was not the healthy baby boy they had anticipated.  Nicolas has since been diagnosed with Epidermolysis Bullosa, or EB.  This is a rare genetic disorder for which there is no cure.  

People born with EB lack anchors that hold the layers of skin together. Because of their delicate skin, children with EB are often termed “butterfly children,” in reference to the delicate wings of a butterfly. The condition affects one child out of every 20,000 births. As a consequence, any activity that rubs or causes pressure produces a painful sore akin to a second-degree burn in patients with Recessive Dystrophic form.  While some forms of EB are mild, some are not.  One form of EB is lethal in the first weeks or months of life. (Learn more about EB here.)

There is no cure.  Further tests have indicated that not only does little baby Nicolas have the worst possible case, but he is currently struggling to maintain his birth weight.  His condition is fatal.

Nicolas’ mother has dedicated her career to nursing critically ill patients in the Southcoast community.  Her coworkers, friends and colleagues are asking for your support during this difficult and heartbreaking time.

Treatments for EB are risky and slow to come.  As there is no cure, daily wound care, pain management and protective bandaging are the only options available.  Parents of children with EB protect the child’s skin with gauze and ointments to prevent infection and to preserve the healthy skin.  Many insurance companies do not cover the necessary expenses that can cost a family up to several thousand dollars a month.

The ‘Friends of Nicolas’ strive to support this family by covering any and all expenses that result from his parents need and desire to stay home to care for and love him for all of the days he has left.  Nicolas has a big sister too who will need all the love and attention her immediate and extended family can spare.

There are two fundraising events taking place in the next few weeks.  The first is a bake sale and raffle held TOMORROW, Thursday, August 7 from 8 am – 3 pm at Charlton Hospital, held outside of the Southcoast Federal Credit Union on the ground floor.  (The address for Charlton is 363 Highland Avenue in Fall River, MA.)

The second is a bus trip to Foxwoods Casino, held on Saturday, August 23.  Buses will leave from Shaw’s parking lot on Kings Highway in New Bedford at 4:30 pm and return at approximately 1:30 am.  The cost is $50 per person and includes $35 meal/casino voucher.  So really, the trip will cost you $15!

Please say a prayer for Nicolas and his family and hug your loved ones close.

If you cannot attend an event but want to help, click here to make a donation. 

We have made every effort to protect the privacy of Nicolas’ family.  

For more information on future events, or Nicolas, please visit the dedicated Facebook group, Friends of Nicolas.  It is a closed group...just request permission to join. 

If you have any questions, please direct feedback to:

Critical Care Units of Charlton Memorial Hospital
Jackie Wilson, RN, CCRN 
(508) 863-2016

Darlene Boutin, RN
(508) 542-4976

Julie Pung, RN
(206) 228-1901

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