The day after I returned from the Mrs. International Pageant, I had the great opportunity to visit Children's Hospital. My first visit was coordinated by Dr. Edward Neilan to meet with one of his patients, Derick Penney, who is taking part in a study for medicines for his condition of Cockayne Syndrome. Derick is a 6 years old boy with such a great little personality. I was able to sit with him while he was having blood drawn for testing to go along with this study he is part of. While he was going through this process, he held my hand, and even turned around and gave me a kiss on the cheek. After he was done, he took me by the hand and walked me to the playroom to get some trucks and play food. We then came back and got to spend time playing and also speaking with his parents. Derick and his family are here from Arizona, and he has a 5 year old little brother back home. They were telling me about the retreat that they had attended recently and met other families that have children with Cockayne Syndrome. I was so happy to hear that there is such a strong support group for families affected by this syndrome as many of us have never heard of it. When it was time to leave, Derick gave me a huge hug and then ran over to my husband Rob and gave him a hug as well. This boy give so much love, and I feel so blessed to meet him and his family. I know that I will see him the next time he is in Boston for another treatment and I can't wait for that day. To learn more about Derick, please visit: http://www.cockaynesyndrome.net/main/Derick.aspx. To learn more about Cockayne Syndrome, please visit: http://www.cockaynesyndrome.net/main/AboutCS.aspx.
My next visit of the day was to see my beautiful friend Bella Tucker. I was so excited to see her bright smile when she saw me in the doorway and reach out her arms to hug me. Bella's favorite animals are monkeys, and I found one that I thought she would enjoy. The squeel she let out said it all, and she named him Brownie. We watched some Disney TV together, talked about her physical therapy, and also talked about our shoe shopping date someday soon. Bella will soon be transferring to Spaulding Rehab before traveling down to Philadelphia to get fitted for prosthetics and be trained to use them. I have said it before and I will say it again, Bella is the strongest person I know. This little girl exemplifies so much strength, courage, and determination. We all have so much to learn from her. Her attitude is all about "I Can!" and "I Will!".
I love both these children and feel so lucky that they have been brought into my life. I can't wait to see you both really soon! Thank you to Dr. Edward Neilan for introducing me to Derick and for helping me to get educated on Cockayne Syndrome. I do hope that with the power of the title of Mrs. Massachusetts International, I will be able to bring some awareness to this syndrome.