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

In the News » Newsletter

Fall 2008 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.

Samantha and Jake

My name is Maria and these are my two beautiful children, Samantha and Jake. In August of 2007 they were diagnosed with Cockayne Syndrome Type II. Their age expectancy is only between 4 and 7 years old. Sam turned 6 in August and Jake will be 3 in October. Both Samantha and Jake are very loving children. Jake is always smiling and laughing. Samantha is constantly giving kisses to everyone on their forehead. They both go to special schools, which they love very much (they both have the title of "mayor" in their schools!)

Cockayne Syndrome is a very rare, neurodegenerative disease characterized by cataracts at birth, developmental delays, tremors, failure to thrive and loss of major milestones. Samantha lost the ability to walk independently at 3 1/2 years old. She can walk a bit with the help of her walker, but suffers from severe tremors since 2 1/2, tremors have made it impossible for her to do much without assistance, such as feed herself or play with most toys. which were getting progressively worse. The tremors have made it impossible for her to do much without assistance, such as feed herself or play with most toys. Sam takes medication to help her sleep and is on her 5th medication for her tremors, which has helped a bit, but her body is unable to tolerate a higher dose. She only weighs 20 lbs. and is having a feeding tube placed in October. Neither Samantha nor Jake can speak but a few words. Jake is still able to walk so far and hasn't started tremoring yet, but he is very delayed.

Recently, I have taken Sam and Jake out of the country for alternative medical treatment. The changes in Jake have really been amazing. He is much more verbal. Although he has poor articulation, he is now saying so many new words and "singing" lots of songs. Physically he has seen remarkable improvement, beginning to climb and walk quicker and steadier. All of his family, therapists and teachers are shocked by the differences in him since May. Samantha has not seen as much progress as Jake, since she is much further along into the progression of the disease than Jake, but her tremors have improved to the point where gross motor wise she is able to sit in a chair without falling and is far less shaky while sleeping or in a resting position. These things are all huge accomplishments considering both Sam and Jake should be regressing, not progressing.

I am taking Sam and Jake again out of the country for this amazing treatment. Although the treatment and travel are very expensive, it is worth every penny if it enables my children to experience a better quality of life while I am blessed to have them here with me.

I also have been lucky enough to have found Angela's House who have been able to help myself and my children immensely through their kind and generous efforts. They have been a huge support and I am so grateful for the help they have given and continue to give.

Sincerely,
Maria Lazazzaro

 

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