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

In the News >> Newsletter

Fall 2007 Edition
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ATDC helps to coordinate the complex array of services needed to support families so that they may care for their medically frail children at home. Angela’s House offers a home away from home option for medically frail children to live in when they cannot live at home. We understand the day-to-day, year-to-year support is very important for the well-being of the children and their families.

We continue the long, drawn out preparation to develop Angela’s House III. One can only imagine the plight a family endures as they wait for this home to be developed. We share with you a letter from Isabella’s family.

I am writing you about my two-year old daughter, Isabella, who is severely handicapped. She was born 11 weeks premature, subsequently suffered a lack of oxygen, and now has extensive brain damage. Her neurologist diagnosed her with having spastic, quadriplegic cerebral palsy. She cannot sit up, walk, talk, hold a toy, or even see. She also suffers with myoclonic seizures that seem to be getting worse. Although she experiences seizures all day long, they are most severe when she wakes up from sleeping. As a first time parent, this has been absolutely devastating to me and my husband. Everyday we struggle to help Isabella achieve milestones when doctors tell us she never will. We never know what each day will bring us, or her. Although she does have asthma, she has no major pulmonary or cardiac problems.

With the severity and fragility of Isabella’s condition, my husband and I fear for her health and safety. This is where things get complicated. She has aspirated several times, and was hospitalized for aspiration pneumonia three times, as she easily contracts this condition. We have also had a few choking episodes at home, where she has turned blue and needed CPR to start breathing again, demonstrating her needs for care at a level greater than we can provide. She does receive various therapies through the Early Intervention program, but we are having difficulty finding everyday care for her. She cannot attend a “regular” day care facility, nor does she qualify for home care because she does not require a feeding tube at this point. We feel as if she is getting lost in the system.

This is why we started looking into a residential home for Isabella to live in. As difficult of a decision as this is to make as a parent, we have to do what is best for our daughter. Our biggest fear is that Isabella would be put in a facility where the staff would stick her in front of a window all day, and have little to no interaction with people. That is why we can see Isabella living in a home such as Angela’s House. What I have seen and heard about Angela’s House, I absolutely love. These children are so well cared for, it brings me great joy to know there is a place that Isabella may be able to go where she will be treated like the precious little girl that she is. I understand there is a waiting list for this one particular facility, and we will wait. However, I find it very sad that with all of the disabled children on Long Island, there are not more of these homes.

I truly admire the work you are doing to build these facilities, and placing these children in an environment where they will be loved and cared for as well as if they were in their own home. I know there will come a day when Isabella’s needs become greater than what I can give her. I can only hope she will be fortunate enough to be a part of a special place, such as Angela’s House.

Sincerely, Frank and Janice

 

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