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
Labels: family
| posted by Unknown at 12:19 PM
Well packing has started. I've checked my list, not once but twice. Right now I am just trying to pack Aislinn's stuff, I will do Andrew & mine bag next weekend. Between the clothes (no I'm not taking "allot") PJ's, shoes, diapers, bottles,Medicines (hopefully we wont need any of it but better safe then sorry)a blanket & little stuffed dog, I got all into the case, closed it & weighed it, 25 pounds~ not to bad. Poor Misty is going crazy, she sees the suitcase out and is whining,crying & barking at them. She know that when the cases come out we usually go upstate to see Andrew's parents. We wonder how Misty will be with Aislinn? For 6 years its been just her who has had our undivided attention, going everywhere with us, sleep on the bed & when we sit to watch TV she is on one of our laps. She is great with all the kids that have come into our home, as long as they share their Cheerios & let her sit by them! Time will tell~
As Always Be Good & Be Safe
| posted by Unknown at 12:25 PM
Little by little Aislinn's room is coming together.There has always been a crib in the room being used by the different rugrats in our lives & we got a daybed from a family member, her dresser was from my & my sisters childhood bedroom, it was brown so I painted it white & added new knobs.
This Winnie the pooh quote has always been one of my favorites. It took me a long time to find this and it was a PITA to put onto the wall. Talk about a labor of love~ For some reason it wasn't sticking to the wall so it had to be put on one letter at a time.
When we first started this journey it was decided that her room would have a Winnie the Pooh theme but since she a bit older I figured instead of all Pooh Bear, we would just do a bit.
The shelves are full with stuffed animals, a Sonya lee doll, Irish Barbie, the pink Stitch & two precious moments dolls that Stew-Be had given me for Christmas a few years back. One is called Balance of Life & the other is Peace & Harmony.
Finally Aislinn Bookcase with some of the books I have gotten for her over the years (it was all organized & tidy but some little rugrats got into it to sit & read the book` after all that's what books are for~ to sit & read) I can't wait till Aislinn is home & we are sitting together & reading.
As Always Be Good & Be Safe
Labels: Aislinn's room
| posted by Unknown at 9:18 AM
