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Danielle Matro-Friedel hasn't added a story.
Easton Friedel was born 8/23/2012 with a rare genetic skin disorder,
Epidermolysis Bullosa (EB). This disease is incredibly painful and in
Easton's case has come along with many other complications as well.
The family has been traveling back and forth to the hospital multiple
times a day, while trying to also care for their other three young
children at home. Easton has been in the hospital for several months
since he has been born, fighting for his life. The family has been
unable to work due to the circumstances. This makes it very difficult
on a family of six, to be able to travel, eat meals while at the
hospital and just everyday life.
As most of you know there has been a fundraising campaign in the
past. All funds which are in a trust set up only for Easton's medical
expenses not everyday costs, household bills, etc. We need your help.
No donation is too small. We all appreciate your continued support and
helping to spread awareness of this devastating disease.
Update:
Easton has come a long way since he was born almost five years ago. There have been ups and downs and he continues to face struggles health wise. He requires frequent visit to the EB Clinic in Cincinnati, OH as well as to see other specialists that have provided his care since birth. We are thankful for the improvements we have seen but know we still have an uphill battle. He is our strength each day and always with a smile on his face. Upcoming is the 18th Annual Debra Benefit which is held in NYC. This benefit attracts many that provide donations for not only awareness but a possible cure. In the Summer of 2018 there will be a Patient Care Conference held in Arizona. This event brings many families that are going/have gone or continue to go through what we experience. We were able to attend this two years ago with Easton as well as his brothers and it was a learning experience to say the least. There are many health care professionals as well as wound care providers that attend. There is a wealth of information and knowledge that is offered to not only the caregivers but to the siblings of the affected child as well. Easton was introduced for the first time to another child with EB. The look on his face and how he reacted, I will never forget. He will remember that day. To know there is someone else just like you when you see so many that make you look and feel "different". We continue to look forward to his future and are ready to face head on whatever comes our way.
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