Angela's House
Coordination of Complex Home Care Services and Residential Services for Medically Fragile Children

In the News » Newsletter

Fall 2009 Edition
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Angela's House 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 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.

Casey

Casey is our 2 1/2 year old son. He has a personality that can light up a room. His smile can melt your heart and break it all at the same time. Casey was born with a genetic skin disease called dystrophic Epidermolysis Bullosa. He lacks the anchoring fibrils that hold his layers of skin together.

Any friction or trauma causes his skin to blister or shear off. He must wear clothes made from soft cotton and the seams must be covered or they rub and cause blisters. He can only eat soft foods and he has lost his fingernails and toenails. Our journey began by learning the art of bandaging and caring for a child with a disease we knew nothing about. We spend two hours a day wrapping his arms, hands, feet, legs and belly in gauze and special bandages commonly used on burn patients. We have to prevent infection on the wounds he has and protect him from the trauma of everyday activities.

Each wound he receives is equivalent to a second degree burn and each one leaves a scar. The continued wounding eventually leads to skin cancer in the teenage years. At any given time 40 percent of his body is wounded. We pop blisters every day on Casey and wrap the wounds they cause. Casey also blisters internally in his esophagus, upper airway and stomach.

Since birth he has been blistering his epiglottis and mouth. He vomits blood and coughs up pieces of skin from his epiglottis. In the summer of 2008, Casey went into respiratory arrest at home from the continual blistering of his upper airway. He was airlifted to Cincinnati Children's Hospital were tests showed he needed to undergo an emergency tracheotomy and place a feeding tube.

Post surgery he developed pneumonia, collapsed a lung, went into respiratory arrest and had allergic reactions to his antibiotics. It was the lowest point in our lives. We were very relieved to see him jumping in his crib six days later as if nothing had ever happened. After a month in the hospital, we returned home drained physically, emotionally and financially. It was at this point that we were introduced to Angela's House. From the moment we met them they jumped in to help with the expenses of the commute to Cincinnati Children's Hospital where Casey attends a specialized center for EB. Without them, we would not be financially able to make this commute every 8 weeks. The joy on my boys faces when they adopted our family for Christmas was priceless. They understand exactly what a family to a child with special needs requires and they never forgot how the rest of the family sacrifices. They are now part of our family and we are forever grateful for the work they do.

Despite all he goes through daily he is a happy and beautiful little boy. What you can't see from this story is his incredible personality and how everyone lights up when he enters a room. We derive the strength to care for him FROM him. He is the bravest and strongest soul we have ever met. Occasionally in life you meet someone who by circumstance has within them the ability to influence society in a unique and positive way. Someone who possesses the ability to get this crazy world to slow down for a moment and take notice of their cause. To us, this person is our son Casey.

 

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