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

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Newsletter

Fall 2004 Edition

A Smile for Angela's House

Jane Hubbard wanted to help the children we work with so she let her creativity move her forward. She worked with Vladimir Polezchayev to create "A Smile for Angela's House" which is a CD full of children's music. We have received $455 from the donations brought in by this project.

A Mom's Drive to Care for Son Closer to Home

I am writing to you because I need help. My son Max just turned 2 in July. He was born with brain stem atrophy, which left him dependent on a ventilator.

From birth to eight months he stayed in North Shore University Hospital on Long Island, 30 minutes from my home. I had then attempted to bring him home, but was not successful. After five hours he stopped breathing, and the nurse did not know how to resuscitate him. He then was in a coma for three weeks. Thank God for miracles, he came back to his baseline. He was then sent to Blythedale Children's Hospital in Westchester, which is 1½ hours away, for rehabilitation. I go every day to see him. They had expected him to stay for 3-6 months, and it is now almost 2 years. Unfortunately it is not a long-term care facility and he needs a place to live. There are no facilities available in our local area that can care for ventilator dependent children. The closest facilities are in New Jersey, which are very far.

I don't understand why there aren't more places for ventilator dependent children. Technology and research has become so advanced that they are able to save all types of medically fragile children. However afterwards, there are no places for them to go.

Just like any normal mother, I want to be able to see my son everyday. I also have a nine year old son. I can't move him away from his father. My parents and my siblings live close by and are my back up support system. I am just trying to keep my family together. I don't want to leave my home.

Desperation has forced me to seek your help. Time is of the essence.

Thank you, Rachel Amar.

Angela's House
P.O. Box 5052
Hauppauge, NY 11788

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