In April, 2013 the very first Tiny Tigers Fun Fair, hosted by National Honors Society, was held at Joliet West High School. The fair provided dozens of games and activities for children to enjoy. It ended up being a huge success! The money from the fair, t-shirt sales and donations were given to the families’ charity of choice of three remarkable children: Benjamin Wisniewski, Noah Galloy and Addison Locke.
Ben is a baby with a congenital heart defect and has had two strokes between his second and third open heart surgeries. Because of this, no one was sure of how he would do developmentally and of his capabilities. But during the time of the fun fair he was showing signs of improvement! He took therapy for speech, physical, occupational, and developmental, which helped him immensely.
Just since April, Ben’s improvement has increased. He is continuing to take speech, physical and occupational therapy, and the therapists are blown away by his progress week to week. He is starting to speak in sounds that are similar to words, crawling and even pulling himself onto his feet. When he came home after his surgery in June, he was on seven medications. Now he is on two medications and does not need any more open heart surgeries. He is a happy one year old with no restrictions!
Noah has a rare bacterial infection called Atypical Mycobacterium Avium Complex and an IL-2 immune deficiency which makes fighting off the infection all the more difficult. It attacked his lymph nodes and organ, which started to shut down his body. He underwent a stem cell transplant in February of 2013 as the last option to save his life.
Little Noah is continuing to fight. The nodes in his abdomen are all gone and there is a vast improvement on the ones in his chest and neck! His air and blood flow has improved as well. However, he is showing some signs of rejection from the stem cells and may need another transplant soon. His family, friends and supporters are hoping his T lymphocytes (t-cells) will stay above 5% or he will require another transplant.
Addison Locke passed away on July 19th, 2013. She was a seven year old girl who suffered from a hepatabastoma tumor. The tumor originated in her liver. She had a transplant, but the tumor already spread to her lungs, and it came back to her liver. The tumors grew and ultimately spread through her body.
Addison loved Disney princesses, especially Merida from Brave and Ariel from The Little Mermaid. She also loved dancing, drawing, singing and coloring. But it was her strength, bravery, determination, positivity and lovable smile that have and will sure to always inspire people.
View Ben’s www.mendbensheart.org to see more details on his condition. You can stay updated with Noah, visit the Facebook page “Team Noah We Care About Rare.” Also view Addison’s Facebook page “Super Addison” to learn about her journey.