Monday, February 28, 2011

Rare Disease Day

Today is Rare Disease Day.Now you may be asking yourself "what is considered a Rare Disease?

A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Today, February 28th 2011 marks the fourth International Rare Disease Day . Hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.

About a month ago my good friend JoAnn called & asked if I wanted to go into the city with her & Teresa (Jo's daughter) & hold a photo of a Histio warrior at the Today show as part of Rare Disease Day. I have been a part of Teresa's whole life and am in awe of all she does for to bring awareness to an unknown disease. Teresa's oldest daughter Taylor has Langerhans Cell Histiocytosis~

Taylor is a beautiful 9 year old girl~Who is very active & fun-loving , she loves to play sports especially soccer. The fight, strength & poise this little girl shows daily as she fights this battle is unbelievable. The last two years we have participated in a bowling fundraiser for histiocytosis & in September we were part of a balloon release.

We fight Histio because ... she fights, with a smile on her face and a laugh in everything. We fight because she shouldn't have to but does anyway. We fight for every hug, smile, laugh, kiss and discovery. We fight so that one day kids like her can say "I am cured."

On the plaza @ the today show, Maureen, JoAnn, Eddie,Teresa Jenny & me

Alone we are Rare.
Together we are Strong

As Always Be Goos & Be Safe


This is an account of our lifes as we head down the path of life towards our first child. An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break." --An ancient Chinese belief

DTC 4/20/07...LID4/26/07. ...Referral 5/27/10~Waiting for our TA...Aislinn Day is March 6,2011

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