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Dear Angels' Place
I just wanted to send you a note to tell you how much we appreciated all that Angels' Place does. We appreciate so much all the kindness you show Lisette. Having a volunteer gave us a great rest from taking care of Lisette and allowed us to get projects done around the house. At holiday times you always remember to recognize Lisette and the rest of our family. This makes dealing with this terminal illness so much easier. Lisette loves her "Spinoza Bear", and when she is happy, we are all happy. Thanks so much!
Lisette was born on April 26, 1997, a seemingly normal baby following a perfect pregnancy. It was at the age of 5 months that we noticed a marked delay. Lisette was diagnosed with Canavan Disease, a rare neuro degenerative brain disease that causes brain swelling and lack of myelin.
Lisette, now almost four years old, cannot eat or drink, or sit up. She is fed by a feeding tube and has a wheelchair. Her communication is infantile. She cry's, coo's and laughs. Lisette is usually happy and playful when she is healthy. She adores her little brother Leo, and she loves to go to school where she is in a special program.
When Lisette is sick, she needs 24-hour attention. Her breathing often becomes labored, and she is unable to forcefully cough to bring up secretions. She is weak to colds and flues and other illnesses that normal children can fight off. We often have to take time away from our jobs and other child, Leo to care for Lisette.
The Angels' Place home would provide a loving family environment for Lisette and her family to rest, recuperate and be within a supportive community of volunteers and other professionals. It would provide a safe place for our family to go to grieve loss and to heal. At times we have felt alone in our battle with Lisette's illness. Angels' Place must have additional funding to assist families like ours who are in crisis due to sick or dying children. Thanks!
Sincerely,
Desiree & Douglas
2/14/01
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