Time for a very overdue post..life has gotten so busy that I am finding it hard to find time to write. Which is very disappointing because as I have said before, it helps me. A lot.
October has ended and with it, so has "Rett Syndrome Awareness Month". We, as a family, did quite a bit to bring awareness for Rett Syndrome. I am beyond proud of all of the efforts made by my amazing family. Let me re-cap:
We attended the "Blue Sky Girls" event in Boston on October 15, 2011. This event was started in New York state and on October 15, 2011 Rett Girls and their families "climbed" various steps at various buildings in a show of support and pride at how hard our girls work, even in the face of all their struggles. The event was not only nationwide but also worldwide. It was an absolutely beautiful day. Blue skies for sure. 31 families from Massachusetts were in attendance. We were joined by our family and best friends and a dozen Rehoboth Firefighters, in full uniform. Jeff had been asked if he could get "a few" firefighters to assist in carrying those girls who could not climb the stairs themselves. He sent out the call and let me tell you, our AMAZING firefighters answered, as usual. They lined the stairs of the Harvard Medical School and as each girl and her family climbed those stairs it was a breathtaking sight. Jeff carried Bella as we walked up the stairs and between the pride I felt for him and the emotion I was feeling for Bella, well let's just say, it was quite a moment. It was the first time we had met other "Rett Angels" and I have to say as nervous as I was to do so, it was the best part of the day for me. These girls are so special and bring so much joy. Their smiles are pure sunshine. After the climb, we had a lunch where we were introduced to the Researchers from MIT who are working so hard for our cure. It was a very special day.
October also brought out everything PURPLE!! Funny that Rett Syndrome's color is purple. My family will tell you that since Bella was born I have said her favorite color was purple and that she looked so good in purple. When we had the house renovated, we even painted her room purple.. go figure.. Maybe we should have stuck with pink!! We painted our nails and toes purple in honor of Bella. It was a huge show of solidarity and I was constantly receiving pictures and posts on Facebook with my friends showing their purple toes..it meant the world to me.
On October 20, 2011 our entire family attended the Festival of Food and Wine in Boston which is, if not the leading, one of the biggest fundraisers for Rett Syndrome in the country. Over the last 10 yeasrs they have raised over 5 million dollars!!! This event almost single handedly funds the clincial trials that are taking place at Children's Hospital in Boston. These trials are testing the possible cure for Rett! When we heard about the event and found out all the ways we could get involved, in typcial fashion, my family jumped right in. The event had a silent and live auction, which is how most of the money is raised. My father in law, who has worked for years helping other charities as part of his job with the Boston Bruins organization was by far the MVP of the event. (Actually that is what they named him that night!) He worked tirelessly to get one-of-a-kind auction items and donations and succeeded in making the auction a HUGE success. We are so proud of him!!!!
In addition, we had our friends, Fred and Donna Paolucci attend and Fred donated his "Dig-it" beach umbrella as a silent auction item. One of the BEST friends a girl could have, Johnna Cutlip, raised a boat load of money in a two week span that helped donate additional items to the silent auction. While we have not received the total amount raised, I hear it was a BIG night! It was a moving, emotional and wonderful evening.
And while I am on the subject of amzaing friends..my oldest and dearest friend in the world, Bonnie Ashby has been a fundraising machine down south in Atlanta. She started with a Stella and Dot jewelry event at her home where 50% of the profits were donated to Rett and then followed that up with "Baking for Bella" which was a bake sale in the lobby of her office building where her and her colleagues baked goodies and sold them for Rett. It boggles my mind how kind people are.. how selfless..how truly giving they can be for a little girl and a family they have never met.. all things I had forgotten in this sometimes jaded world.
And then, there is the efforts of my sister in law, Heather. I wish I could describe this and truly do it justice, but I am not sure I can, but here goes.. Heather is a third grade teacher and her love for Bella has been abundant from the moment Bella was born. As much as Heather's heart has been broken by this evil thing called Rett Syndrome, she has dug in and has poured herself into raising awareness for Rett and raising money for the cure. Now, I have to give some background quickly.. Heather often uses Bella and Zackary as examples to her students and each year, her students hear all the stories of Bella and Zack's antics..at some point every year, we bring Bella and Zack in for a visit. The first time I ever brought Bella in to her school I thought we were being ambushed by the Papparazzi!! Everyone knew Bella.. EVERYONE! It was the sweetest thing. As the story of Bella's diagnosis has reached both Heather's past and present students, the outpouring of love and support has been impossible to describe.
Each year, the teachers donate money to a local charity so that they can wear jeans on Fridays. During a teacher's meeting this year, Heather asked if the charity could be Rett Syndrome. It was up to the teachers to decide if they wished to donate all or part of the money used for "Jean Friday" to Rett Syndrome. I can say, the checks came rolling in. It was a wonderful tribute to Heather. Then, just this past Friday, Heather arranged "Wear Purple Day" to finish out Rett Syndrome Awareness Month. Her entire school participated, it was a sea of purple and donations were given, even from "piggie banks". It was an overwhelming and moving show of support for both Heather and Bella. I am so proud of her and feel so blessed to have her as my sister and that my children have such an amazing young woman as their Auntie.
So as you can see..we are fighting the good fight.. we are doing our part so that we can be rid of Rett Syndrome.. so that NO other family must go through this.
October also brought good news for us as Bella passed her "swallow test" with FLYING colors! She is eating, chewing and swallowing just fine!!! She has been on acid reflux medicine for about a month and we have seen a significant reduction in her coughign and gagging. WHOO HOO!
Bella is now 28 pounds 2 ounces.. she continues to thrive with her weight and her muscles are getting stronger. She has made much progress and we are feeling so thankful and blessed. I cannot help but think that it is due, not only to my daughter's amazing spirit, but to all the prayers and love and positive energy that she is surrounded by.
October has been pretty good to us. We are fighting, fighting hard, through it all, the ups the downs, the saddness and the joy, and I am beginning to believe that Rett Syndrome is starting to question whether it was a good idea to take on the Rutko/Ceritto families and TEAM BELLA!!!!
