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Contact: Carm Mancini PenFinancial Credit Union Thorold, ON Phone: 905 641-2662 carm.mancini@penfinancial.com |
dEBra Canada Stoney Creek, ON 1-800-313-3012 jwilson@debracanada.org |
Press Release
Heartbreak Hits Close to Home: PenFinancial Credit Union Donates $1,200 to Rare Genetic Skin Condition
Welland, ON, June 25th, 2007: The staff of PenFinancial Credit Union was devastated to hear news of a fellow employee’s infant nephew passing away after only very briefly experiencing our world. Nicholas Andrew Mancini was born on July 28th, 2006 and was diagnosed, almost immediately, with a very severe case of Dystophic Epidermolysis Bullosa. He passed away 31 days later.
Epidermolysis Bullosa (EB) is a rare group of genetic skin disorders causing blistering and shearing of skin tissue both internally and externally from the gentlest friction, even sometimes spontaneously. Specifically, EB sufferers lack the anchoring fibrils or glue that hold skin together. Children with EB are named “butterfly babies” because the beautiful, yet fragile wings of the butterfly are much like the delicate skin of a child with EB.
Carm Mancini, Branch Manager of the St. David’s Road PenFinancial Credit Union office was overwhelmed when she heard of the staff plan to raise funds for the Dystrophic Epidermolysis Bullosa Research Association (deBRa) of Canada. “Losing Nicholas was devastating. Even though he was only with us for such a short period of time, those who were able to experience his sweet spirit now have a deeper understanding of just how precious life really is.”
Jay Wilson, Director with dEBra Canada agrees “I can speak first-hand to what EB is capable of as two of my three children have been diagnosed with Dystrophic EB. Donations and support go a long way in assisting families dealing with EB and on behalf of deEBa Canada, I want to say thank you PenFinancial.”
Only 300 cases of Dystrophic EB have been diagnosed across Canada although very minor cases can often be misdiagnosed as other, more common, skin conditions such as eczema. dEBra Canada is a National Charity however it is not well known due to the rarity of cases as compared to other diseases. Donna Wronski who is a member of the PenFinancial Fundraising committee was pleased to be part of helping to raise awareness and donate to such a worthy cause. “When you see these children and read their stories, you can’t help but want to reach out and assist in any way possible. All the staff were happy to work together to make this donation.” Funds were raised through a bake sale and in-branch raffles.
For more information please visit debracanada.org