Showing posts from February, 2016

World RARE Disease Day 2016

World RARE Disease Day is an annual observance held on the last day of February. Today, Monday, February 29th, Chizuk Amuno Congregation staff wore "jeans" for genes to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families. According to the Global Genes website, there are approximately 7,000 different types of rare diseases and disorder and 30 million people in the United States are living with a rare disease. This equates to 1 in 10 Americans or 10% of the U.S. population. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. Approximately 50% of the people affected by rare disease are children. Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
Living with a family member with a rare disease can be rewarding and challenging …

Words in Your Heart that You Can't Utter

One of the hardest things in life is having words in your heart that you can't utter....James Earl Jones

This saying stares at me each and every day, hanging in front of my at my desk. There are plenty of words in my heart which I have not shared or uttered over the years. As I was looking at the above saying, an article from the Mighty appeared in my email. The article was titled: WHEN YOU FEEL HELPLESS AS YOUR CHILD FACES SEVERE MEDICAL ISSUES. Well those are definitely words which have been in my heart over the past 13 years (well almost 13 years).

The author Kasey Anderson had some other words which have been in my heart...

I assume that the general consensus is that being a parent is hard work. When you watch your child sleep at night, it really is like looking at a piece of your soul right before your eyes. You imagine the life they will have, you make plans for school, you try to teach them to make friends, to be fair, to help them hone and develop the skills that will allow t…

Welcome to Our Mischief Child

Meet Caddie. We welcomed her into our family on Thursday, January 21, 2016. She has added something back into the home which I am not sure any of us realized was missing. As Joey, aged, we lost a lot of what we have gained back from Caddie. She is 3 years-old, can be timid around new people however, when she is comfortable with you watch out. As her comfort level with our family has increased, we have seen her mischievous self come out. As the last photo shows, the adage "my dog ate my homework" could hold true. Thank goodness it was not homework she really ate but we are starting to learn, Caddie thinks if it is on the bed or in her reach it is fair game to start chewing on. We are looking forward to many more moments with our mischievous Caddie.