ATDC - Association for Technology Dependent Children Angela's House
  Residential Services for Medically Fragile Children
Coordination of Complex Home Care Services

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Newsletter

Fall 2004 Edition

Message from the Executive Director

It was fifteen years this past summer that our daughter, Angela, was born. Our heartfelt efforts to help her turned to helping others as we learned about the many medically frail children in our community.

We have seen some progress over the years but we still have a long way to go. I look forward to the exciting progress of next year. We will see Angela's House II open soon. We look forward to helping new children and families that are referred to us.

We will be very busy setting up a resource fair with the LI Network of Children with Special Healthcare Needs so that both families and professionals will have a chance to see the services available to help medically frail children under one roof. We look forward to having another successful year with our fund raising activities.

We still have a lot of work ahead of us. We need to connect with families sooner so that we can get them the help they deserve. We will continue to move forward with a respite (relief) house despite the setback of losing the opportunity to build this home on the church property that was offered to us four years ago. We also need to work on developing a home for children who are dependent on a ventilator. This is tragically a reality as we learned about Max Amar, who is living in a hospital 1-½ hours from his family. (see story pg 4)

As the year comes to an end, I extend to you, wishes of a Healthy New Year. I also ask that you keep our families of children that passed away this year in your thoughts and prayers.

A Day in a Life: One Family's Story

On Long Island, there is a war being fought 24 hours a day, 7 days a week and there is no cease-fire. Karen and Michael are fighting against all odds to give their daughter, Grace Catherine, the best life possible and prevent their most feared enemy, infection, from claiming the life of their daughter. Every day since Grace was born in March 2002, they fight this battle along with doctors, nurses, therapists, wound care specialists, family, friends and, most of all, their love. Grace, better known as Tinkerbell or Princess, was born with a devastating, life threatening, rare genetic skin disorder called Epidermoslysis Bullosa. Of the many subtypes, Grace was diagnosed with the most severe, Recessive Dystrophic. These test results took one year since there is only one lab in the world that tests for this condition.

This condition has no cure. Friction, heat, stress, and/or traumas produce blisters leading to scarring. Due to the delicate nature of their skin, these children are called "Butterfly Children". The blisters occur anywhere and everywhere on the body including the GI tract and eyes. Excruciatingly painful and itchy, Grace requires daily medications, however, these never take the symptoms away completely. Her mouth and tongue are also affected so her speech and eating are becoming increasingly difficult. It is a never ending battle to maintain the calories and protein needed and also prevent the blisters from spreading.

Each day in the war brings a new battle. Until the war is won, Grace and her parents are fighting against insurmountable odds. As she gets older, her needs increase. They ask for your help. Help to meet her needs and to overcome the ignorance. If and when you see Grace and her parents, please ask them about EB. Go on-line to the website of DEBRA.COM and other links and learn more. Enjoy and be thankful for each day and treasure the moments with your children.

ATDC Finds Support in the Community for David

David is a precious young boy with a smile that will make you melt. David is supported with a complex life support system. In David's short life he has had over 100 surgeries and has spent over 500 days in the hospital. The family had no choice but to have him live in the family's dining room. Efforts of outreach into the community were successful in getting the necessary funding and supplies to convert the family's garage into a handicapped accessible bedroom and bathroom.

Bob Policastro, Executive Director, was ecstatic over the success of this effort. He said, "David deserved this room and it was a dream to see." He wishes other families would have this same luck and support by their community, but it doesn't happen often enough.

 

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