Alex's Story
Alex is a ten year old boy with a contagious smile. He has a reputation for melting the heart of everyone he meets. He loves big dogs and babies and to give and receive gifts.
The team at Cecily's Closet has wanted to help Alex and his family for a long time. We are so excited that his dream room is finally a reality. Alex loves his big sister, Elaine. Elaine is a devoted sister, an accomplished musician and a fan of all things Lego! Due to the overwhelming generosity of the families in the Cardiff School, Cecily's Closet was able to give Elaine a few extra fun surprises in her updated room, too! Alex was born a typical, healthy child. He has a rare, undiagnosed disease that has confounded the medical community. We encourage everyone to watch this video that documents Alex's life and his journey. After 4 years of countless tests and visits to consult with some of the best physicians, scientists and researchers in the world, Alex's odyssey continues. A cruel and mysterious disease robs Alex's abilities one after another. This video and collection of photos documents the progression of the disease over the last 7 years. Alex's family continues to relentlessly search for diagnosis and treatments for Alex. Up until first grade, Alex could walk. By second grade he was not only in a wheelchair but could no longer wheel himself around or sit up by himself. As he became weaker, more straps, support and buckles were added to his wheelchair. He thinks his Mom, nurse and aide are just like a pit crew at the Indie 500 when they get him in and out of his chair. Alex used to love food. He enjoyed sweets and cupcakes but now he is fed via a feeding tube. Alex cannot wait until he can use his mind to control a computer, just like the Jedi uses "The Force". Alex's favorite movie is Star Wars so it will come as no surprise that this was the theme he selected for his new room. Alex was becoming too heavy for his Mom and Dad to carry up and down stairs so Cecily's Closet helped his family transform their dining room into a new space for Alex to enjoy. If you asked Alex to describe his condition he would say it was complicated. He has good and bad days and they vary dramatically. Alex has been in the hospital for the last two weeks and we're hoping that when he returns he is grinning from ear to ear in his new room! Alex is very blessed to have an extraordinary Mom and Dad. His Mom, Caroline, founded a support group for undiagnosed parents. She is committed to sharing Alex's story in an attempt to shine a bright light on all of the children suffering with rare and undiagnosed diseases. You can learn more about her efforts and choose to attend the February meeting, here. She is a fierce advocate for Alex and ensures he receives everything he needs to achieve his full potential. Alex's story is also featured in a documentary called Undiagnosed, Medical Refugees. We would like to thank the MAC Class at The Cardiff School, the teachers, the students and generous parents for donating their time and talent to help Cecily's Closet complete our first makeover for 2016. Thank you to PaintGreen for coming in and kicking off the install process with a perfectly painted room. Thank you to Hanna of Hanna's Murals for providing a spectacular mural for Alex to look at every night. There are no words to describe how stunning this art is and how it truly set the tone for the space. It even has glow in the dark paint! Is there anything cooler than that? Thank you to Bobby and Vay for pre-building all the furniture and assembling the puzzle-piece lamp so we could get our install done as quickly as possible! We are so grateful for your team-work and your patience. We would be lost without your A+ skills and support. And welcome to our newcomers Sarah and Janine! This dynamic duo is new to Cecily's Closet but scored a home-run on their first project! We are so happy to welcome you to our volunteer family! And thank you to the Rancho Santa Fe Foundation for generously granting Cecily's Closet the funds to keep our organization chugging along! Thank you for making Alex's Sweet Dream Room makeover a possibility! Alex's Sweet Dream Room Makeover
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Thank you to the Multi Age Class (MAC) at The Cardiff School for embarking on a very special project for Alex. The first, second and third grade class worked very hard to understand Alex's unique needs and to design a space that would be not only fun and exciting, but functional and provide him with as much accessibility and comfort as possible. Our team at Cecily's Closet was in awe of the questions and thoughtful nature in which our youngest volunteers crafted their design plans. Thank you Alex's devoted family for opening up their heart and sharing Alex's story with this classroom. We are confident that this experience will leave a lasting impact on their big hearts and minds! We are so grateful to the teachers, Miss Douillard, Ms. Boyesen and Mrs. Motts for embarking on this project. We would like to extend a special thanks to the very generous parents in the MAC class who contributed extra funds in order to bring all of the children's ideas to light. This was the best way to kick off our 2016 room makeover program! Thank you to our number one partner, PaintGreen. Since day one, PaintGreen has opened its heart to Cecily's Closet by providing perfect and professional paint jobs for EVERY one of our room makeovers!
PaintGreen was founded by Jon Ray, who has been painting since 1996. Jon ran a student painting franchise while going to business school at Seattle Pacific University. During this time, he learned that providing quality work and operating in an environment of integrity earned him referrals, was a great way to grow a business, and matched his personal values. Jon founded PaintGreen in 2006. Customers receive high-quality painting for a fair price. Painters receive fair compensation and respect on the job. Suppliers get honest dealings. Hanna's Murals
Hanna's Murals is located in sunny San Diego, California, and is owned and operated by native Californian Johanna Daly. Daly started Hanna's Murals in 2005 and has painted hundreds of murals all over California. She started painting small residential murals, mostly nurseries and playrooms, and over the years has progressed into large-scale exterior murals. She has worked with Rady Children's Hospital, The Holiday Inn, The City of San Diego and numerous other organizations. However, her favorite projects have been those that give back to the community. She has donated her time and talents to the Golden Hill Youth Center, Cecily's Closet, and Becky's House.
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Cecily's Closet