Yesterday I had the most incredible opportunity to meet a little girl that has inspired so many and has won so many hearts. For me, if I have ever admired anyone so much to call them a hero, it is Bella. At 8 years old, Bella has more strength and courage then most people I know as adults. In such a short period of time, she has gone through so much. After battling Streptococcus Pneumoniae Sepsis, Bella fell into a choma, had all four of her limbs amputated, and also got through pneumonia. I knew that going to Children's Hospital to meet her would be amazing, but I never realized how rewarding this experience would be. To meet Bella and see her bright smile as her dad wheeled her to the lobby and see her waving to us was the best feeling. We took a walk to an outside garden and talked a little bit about the things that Bella enjoys such as gymnastics, her family, Mrs. BoJangles her cat, and also shoes. Bella has been told that with her new prosthetics, she will be able to wear normal shoes, to which we invited her on a shoe shopping trip, and her smile got larger and brighter, she is such a girl! Its amazing how far medicine and technology has come, Bella's dad told us that the prosthetics that Bella will be getting will be attached to her nerves which will allow Bella's body to control the prosthetics. That is just amazing! When it got a little to warm, we went into the game room and continued to chat and get to know Bella and her family. Also visiting Bella were her neighbors, her aunt and cousins, and her grandmother. It was so nice to meet them and it easy to see where this girl gets her cheer and strength, they are such loving people. We then took a walk back to Bella's room and got to witness her physical therapy session. Bella did 12 different exercises and after each exercise, we got to give her a monkey award on her door. If you don't know, Bella loves monkeys, and she had pictures and stuffed animals all over her room. To watch her do her exercise and see her strength physically and mentally is amazing. She is such a determined little girl, and you couldn't help to notice how proud everyone in teh room was of her. When it was time to leave, we took the elevator ride with Bella as she was heading to have lunch with her family, and as we parted ways, Bella gave us all a great big hug. I was so proud to have met her and her family and also to present funds raised at the East Longmeadow Carnival and some Bella Bracelet sales. You could see the appreciation in her dad's eyes. I know that this family will be a part of my life for a very long time, and I also know that Sierra will grow up looking up to Bella for so many reasons. Bella will do amazing things in her life, and I am so greatful I got to know her and can't wait to support her in all she does.
Along with me came Miss Massachusetts Teen USA Brooke Bibeault and Miss Massachusetts World Teen Tamara Sacharczyk. I have had the honor of sharing my year and several appearances with both, and I think that we all have to agree that this has to have been one of the major highlights of our reigns. Bella has won a very special place in all three of our hearts. Maybe we will even take a road trip to visit Bella in Philadelphia while she is getting her prosthetics.
Another great moment we had was when we were saying good-bye to Bella, a mom approached Tamara's mom to see if we could come and visit her daughter who at 5 years old had just had open heart surgery just a few days ago. When we walked into the room, this little girl's smile just beamed! We took a picture with her and she loved wearing my crown. It was so nice to see her mom smile and be so appreciative that we took the time to visit her daughter. We also got to meet a few other kids who were patients at Children's Hospital in the game room while we visited with Bella.
As Brooke and I were walking to the garage to our cars, a gentleman stopped us and asked what we were doing at Children's and who we were affiliated with. We shared Bella's story with him and told him we were there to meet her and to deliver funds we had raised for her cause. He asked if he could talk to us about research that he is involved in for Cockayne Syndrome. If you have not heard of this disease, it is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan. CS is inherited in an autosomal recessive pattern. In order for a child to be affected by CS, he or she must inherit a mutation (-) in the same CS gene from both parents. The parents and other “carriers” of a single CS gene mutation remain healthy. Once a couple are known to carriers, they have a 1 in 4 (25%) chance of having another child with CS. As Ed was telling us about this, Brooke told him that a family friend's child had died of this disease. Once again, there are no coincidences in life, and things happen for a reason which is why Brooke and I were leaving the hospital with our banners still on to catch this person's attention. Today I got an e-mail from Ed expressing his gratitude for sharing our time with him to allow him to talk to us about CS. I am so looking forward to working with he and Brooke to bring awareness and meet these special little kids and hopefully make a difference in their lives in whatever way we can.
Thank you again to Bella and her family for allowing us the opportunity to come and see her and to spend an incredible day with her. We are so blessed to have met you and have you in our lives. http://www.friendsofbella.org/.
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