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

Spring 2008 Edition
click here for a printable version

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.

Brandon Thomas LeMaire

Looking back to the evening of February 18, 2006, we were on top of the world. Life was perfect. I was 9 months pregnant and scheduled for a c-section in just a few days. Nothing could be better. It was a fairytale, a storybook.

On February 19, 2006, when my water broke, it was supposed to be the most glorious day of our lives, the baby was coming. It was not what was planned, but it was no big deal. On the fetal monitor, his heart rate dropped and he was born by emergency c-section.

It´s amazing how fast your dreams change. When you are pregnant you wonder things like: What will our baby be when they grow up? What will school be like? Will they be good at baseball, basketball, or dance? When Brandon was born, our questions were: What should we do? How far will we go medically? Will he ever come home? How can we get through this?

He was in the NICU for 2 months. Then was transferred to Blythedale Children´s Hospital in Westchester. During those months, we spent every waking moment with Brandon. We were at the hospital around the clock. We met with other families, social workers and nurses. Finally on May 10, 2006, Brandon Thomas LeMaire came home!

Finally our baby boy was home! We could not have been happier. We had the training in g-tubes, feeding pumps, suctioning, oxygen, CPR. We had all the supplies. We were set!

We had all of our family and friends to support us around the clock but they just couldn´t help us with certain things, they didn´t know the ins and outs of the system any better than us. They helped us with Brandon´s care as best as they could. But we never felt more alone in our lives!

I can remember being at my wits end. Brian went back to work and I was home with Brandon waiting for our Medicaid papers to go through and get nursing. The system was so difficult to navigate. I ended up getting Bob Policastro´s name and gave him a call. He knew exactly what we were going through. Immediately he began helping us. He put us in touch with the right people.

It just felt so good to finally have a group that understood Brandon, and that understood us. Our feelings were normal, Brandon was not so abnormal. ATDC coordinated our Care at Home Program. We were able to get all of his intervention therapies, additional equipment and the much-needed help at home we needed with nursing care. Our caseworker worked hard to keep sending me nurses to interview until we found the right combination of hours and personalities to help our family.

ATDC/Angela´s House was there through each stage of Brandon´s life. They watched him live, grow and improve. They were there for the highs and unfortunately, but thankfully the lows.

On October 1, 2007, after defying the odds for 19 months, Brandon could no longer fight. The little guy left us. He went very peacefully. Now we know he is in a better place. He is free from the constraints that his body had here with us. He is holding his head high, walking, talking, eating, smiling, laughing and playing. He is a typical toddler.

That is not where our story ends. We are eternally grateful for ATDC/Angela´s House for helping us and supporting in ways that our family could not. We have the need to give back and help others the ways we have been helped, not only financially, but also emotionally.

We would like to say thank you to everyone who has guided our journey.

With gratitude,
Frank and Janice

 

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