Tuesday, February 28, 2012


February 29th is World Rare Disease Awareness Day.

This year's focus is Solidarity. Why Solidarity? Since patients are rare, expertise is scarce and people living with rare diseases face similar challenges, so acting together makes sense. http://www.rarediseaseday.org/

There are 3 very special children I would like to support on this day.

The first, most obvious, is Liam.

Diagnosed at 8 months old with Hepatoblastoma. Hepatoblastoma is a solid tumor is the liver. There are only about 50 cases in the U.S. each year, with a 5 year survival rate of 60-70%. This accounts for 1% of all pediatric cancers.

My next solider is Liam's buddy Nolan.

Nolan has Neuroblastoma, while this is most common cancer in infants, I honor Nolan today- all pediatric cancer is considered rare. Neuroblastoma is a tumor that develops in the nerve tissues. Neuroblastoma can spread to multiple areas of the body; bones, bone marrow, skin, liver, lymph nodes. Nolan had several rounds of chemo and surgery like Liam, he however still has a tumor. Thankfully this scans have been clean for the past year- the tumor is not active.

Another Hero of mine- Kaitlyn.

The epitome of rare. Kaitlyn is 1 of 5 children in the U.S. with Niemann Pick Disease Type A. With a life expectancy of 2-4 years, this strong family cherishes every day they have with Kaitlyn, who is now 2 1/2 years old. With no cure or treatment, this little girl and her family are in our daily prayers.

Solidarity. Together we can do more.
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1 comment:

  1. Thank you for including Kaitlyn! :-) Hope you guys are doing well! :-) Deanna