Jennifer and Joseph Bush of Huntsville describe their daughter, Chloe, 2, as a bright, sweet, loving and determined little girl who is trapped inside of a body that is atrophying.
Diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a terminal illness, Chloe has suffered complete respiratory failure and is now permanently ventilator dependant. Her muscles are too weak to move, including the facial muscles that once allowed her to smile.
“Her muscles continue to get weaker, but her mind remains bright and her intelligence is completely unaffected by the illness,” Jennifer explained. “She is my inspiration and she continues to show me and all who meet her that happiness and contentment are all a state of mind.”
Chloe began receiving UCP services in August 2007 through the Early Intervention program. Jennifer and Joseph agree that the physical, occupational and speech therapies Chloe receives have been very beneficial to their daughter.
“We have received help and lessons from all of the UCP therapists on how to keep Chloe stimulated both physically and mentally,” Jennifer said. “They have provided T.A.S.C. type toys. They have kept Chloe’s muscles and joints growing properly, despite her inability to lift a finger on her own, through physical therapy and occupational therapy. Also, I have received resources through UCP’s EI Service Coordinator Jill Stewart who continues to help with our family and individual needs.”
Because Chloe is unable to participate in weekly playgroup at the UCP Therapy Center, former UCP Special Instructor JJ Jayne brought a special playtime experience to the Bush’s home.
“We enjoyed our time with JJ thoroughly,” Jennifer recalled. "Chloe would smile so big when she saw JJ come through the door. What a joy it was for her that a non-family member was coming to PLAY instead of just for therapy.”
“UCP has absolutely been a valuable resource for our family,” Joseph added. “Thank you, UCP, for all you’ve done for us.”
The Bush family cherishes each day with Chloe and is sharing her life’s journey with others at Chloe’s SMA Angels and Caring Bridge websites. Jennifer hopes here to also share the very important life lessons learned from her journey as “Mommy to Princess Chloe.”
“It isn’t about how fast or physically strong you are,” Jennifer explained. “It isn’t about having the ability to speak, play, ride a bike or even change positions on your own. Happiness is waking up to see another day, to go ride in your wheelchair while Mommy pushes as fast as she can, to see your favorite cartoons, to be read your favorite stories, and to be with family and friends.”
To learn more about all UCP programs and services, please email firstname.lastname@example.org or call 852-5600.