Max's Story - Mission of Giving
Meet Mighty Max - the cutest little night owl in San Diego. This bundle of night-time energy has a party is his room every night! His parents, along with more than 30 other people, reached out to Cecily's Closet with a desperate plea: please provide Max with a safe and secure room.
After reading through the steady stream of requests from therapists, medical providers, family and friends our board of directors voted unanimously to provide Max with a new room!
Max is an only child to Mom, Diane, and Dad, Joe. Max was born prematurely at 32 weeks with a hole in his heart and only one kidney.
The family has spent the last three years focusing on early intervention with physical, occupational, and speech therapy. They are doing everything they can to ensure he receives the best care and treatment for his condition.
Max was born with an extremely rare chromosomal disorder called Smith Magenis Syndrome, or SMS for short. SMS is a chromosomal disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by a missing piece of genetic material from chromosome 17, referred to as deletion 17p11.2.Due to his sleep disturbances and behavior issues the family has not slept since his birth.
Common features of SMS include: infant feeding problems, low muscle
tone, developmental delay, variable levels of intellectual disability, early speech/language delay, middle ear problems, skeletal anomalies and decreased sensitivity to pain. The syndrome also includes a distinct
pattern of neurobehavioral features characterized by chronic sleep disturbances, arm hugging/hand squeezing, hyperactivity and attention
problems, prolonged tantrums, sudden mood changes and/or explosive outbursts and self-injurious behaviors.
Mom and Dad are passionate about educating others about lesser known
disabilities - like SMS. At the time Max was diagnosed, there were only 600 people in the world with the diagnosis. Although the exact incidence is not known, it is estimated that SMS occurs in 1 out of 25,000 births.
SMS is under-diagnosed, but as awareness of it increases, the number of people identified grows every year.
Both parents expressed deep and continued gratitude over getting Max's room transformed into his favorite place, Disneyland! Max's unusual sleep schedule - waking at 1am, 2am and 4am - turned their lives upside down. The gift of having his bedroom made over to become not only a safe room, but a fun room is going to change their lives once again - and this time for the better!
Max is now living in a replica of the happiest place on earth! We think the pictures speak for themselves! He will wake up with his favorite characters and favorite place - no matter what time of day it will be - and he will be happy and safe! The team kept furniture to a minimum and provided locks on the armoir to prevent Max for getting into trouble while his parents slept. They provided custom shutters to ensure Max couldn't hurt himself near the window, too. The entire focus of this room was providing a safe place that didn't seem sanitized from everything a little boy needs - fun and toys!
Thank you team for making Max's Sweet Dream Room Makeover possible!
Professional Photography by Andrew McRory
Photos by Cecily's Closet
Thank you Bassett Furniture, a trusted furniture provider for more than a century and one of the most recognizable brands in America for reaching out to Cecily's Closet to see how you could participate in our Mission of Giving Program. From the first phone call we could tell how excited the team was to participate and the momentum only built from there!
Laura Cross at Bassett was a dream come true for our team! Her energy, passion and commitment to ensuring the team delivered over-the-top results never wavered. Bassett was able to get a special latex mattress and pillow donated from Steve Baumberger with Pure LatexBLISS. They bolstered the Cecily's Closet budget with in-house fundraising at Bassett and donated an adorable Bassett trunk that looks like it came right out of Disneyland, and a beautiful Bassett armoire, too.
The team at Bassett reached out to their connections far and wide to procure items for Max's special place. Cindy at Bassett harnessed her purchasing power to secure a lot of wonderful deals from the Disney Company, too. Heather at "Scribble-It" in Newton, Massachusetts donated a personalized peg board and a hooded towel, Debbie Whaling made custom towels with personalized towels with Max's name, and the team secured a wonderful deal on the complete collection of Signing Times videos.
Thanks to Jon Ray at Paint Green for the beautiful and perfect paint job. The Dunn-Edwards paint color Oh Boy! just popped off the walls! Thank you Dunn-Edwards for donating the paint that provided the perfect backdrop for the masterpiece by Emily Dolton of
Inside Emily's Head.
Emily served as Project Lead, working with the Bassett Team, and as artist for this fun-filled Disney inspired room. The pictures speak for themselves! We can't believe how she transformed this room. It truly is now the happiest place on earth. Emily teamed with her favorite contractor, Ryan McDaniel from McDaniel General Contracting for the It's a Small World door and for helping her create Max's Haunted Mansion closet playhouse. Ryan's amazing contractor skills - paired with patience and team-work with Emily really made this room come to life! Those doors are insane!
Thank you to Dave and Wade from the Shutter Guys for doing an excellent job on Max's window treatment. You not only provided us a great price - you made sure that the blinds locked securely on the inside - and away from Max's little fingers. We appreciate your safety first style!
And thank you to San Diego Family
Magazine for donating so many toys for Max!