Annabelle's bedroom looks exactly like that of any 4-year-old "girlie girl," as her mother describers her. Cozy stuffed animals overflow from a toy hammock in one corner, and bows in every color of the rainbow adorn the walls along with a sign that reads, "Giggles and curls, ribbons and bows, she's adorable from her head to her toes." The only atypical thing in this room is also, without question, the most important—her bed.
"Too bad they couldn't record the scream I made when I found out we got this bed," says Annabelle's mother, Tiffany. "I was in the middle of Target shopping for school supplies when I got the call. The manager came over and asked if I was OK because I started crying and had to sit down on a shelf."
Tiffany can't stop smiling when recalling the story of a bed that has proven to be a miracle for her family. Annabelle lives with numerous rare medical issues, including hypotonia, an illness that leaves her with no muscle strength and respiratory conditions. Because she is required to sleep in an elevated position to keep fluid out of her lungs, her family tried using pillows, foam blocks and stuffed animals to prop her up throughout the night while running her feeding tubes and monitoring cables through the rungs of her crib. Tiffany and her husband set an alarm to take turns waking every 30 minutes to check on Annabelle because she would frequently get tangled in the tubes or her body would become stuck in the rungs, causing asphyxiation and bruising.
Annabelle desperately needed the $25,000 SleepSafe, fully padded therapeutic bed her healthcare providers recommended that would manage the tubing and keep her elevated, but insurance continually denied the request. Thankfully, Tiffany discovered Kristen Mantlo and the SMILE organization and truly found out what dreams are made of; after SMILE was able to negotiate a lower cost and provide the bed to Annabelle's family free of charge, they all slept through the night for the first time in a year.
Mantlo, SMILE's executive director, says that when she started the organization in memory of her sister Samantha, who lost her battle with childhood cancer in 2009, she didn't realize there was so much need.
She explains that every year, more than 27,000 children are diagnosed with a life-threatening condition and will need millions of dollars of healthcare and equipment.
"Most families do not prepare for the financial burdens associated with life-threatening medical conditions, and they should not have to focus on fundraising for items when they should be concentrating on their child's wellbeing and building memories," she says. "By providing families with medical items at no cost to them and with a simple application process, families can spend more time making SMILEs than worrying about fundraising."
Nijel had a brain tumor, which impaired his balance. Getting in and out of the
bathroom every day could present a challenge when trying to step over the tub's
ledge. To provide safety for him and peace of mind, a SMILE supporter installed
handrails in Nijel's bathroom to provide stability and independence.
Isaac was diagnosed with Occipital Encephalocele (a fatal neural tube disorder)
at 5 months in utero. The family was told Isaac would not live past his first month's
birthday if he survived his birth. Isaac had three surgeries within the first 10 days of
life, but his skull was not fully closed in the back due to neural tube disorder which
left his brain exposed. As Isaac became more active, a set of new concerns arose for
protecting his head. SMILE supporters provided Isaac with a Soft Protective Helmet
that provided cushioning and safety as he learned to walk and explore the world
around him. Isaac is now a happy 4-year-old.
Aubree was diagnosed with Stage 3 Neuroblastoma and suffered paralysis of her
lower extremities as a result of her tumor's location. Tricare turned down her family's
request for a hand tricycle. Similar to a regular tricycle, the hand tricycle provided by
SMILE enables Aubree to play outside with her siblings while at the same time
strengthening her upper body as a form of physical therapy.
At 10 months old, Emma was diagnosed with Medulloblastoma, a brain tumor
located in the cerebellum. She underwent chemotherapy, stem cell rescue and
surgery, which caused her to lose hearing in both of her ears. Unfortunately, hearing
aids are often not covered by insurance and are extremely costly. SMILE provided
Emma with a pair of hearing aids and four sets of hearing aid molds. Photo by Greg
Swaim.
Since 2011, the volunteer board and Mantlo have helped more than 30 SMILE Kids (22 in the last two years) with more than $50,000 of assistive and adaptive equipment, such as a wheelchair stair lift, hearing aids, jogging stroller, therapeutic tricycle and so much more.
To fund the equipment, SMILE relies on grants, donations and fundraising events. For other duties, such as assembling and delivering the equipment, Mantlo uses elbow grease alone. Volunteers, she says, are always encouraged. (Besides running SMILE, Mantlo also teaches and is an Old Dominion University doctoral student working on her dissertation.) The work is time consuming, but her spirit never wanes
"I couldn't have a better job even though I don't get paid," she says." I love doing this in memory of my sister."
One of Mantlo's favorite parts of her job is following up with SMILE Kids, as well as organizing empowering events for all of their families, like a recent visit to iFLY in Virginia Beach.
During her latest visit with Annabelle, Mantlo adores hearing how well she is doing. Tiffany gives Mantlo a long hug and lets her know how strong her daughter has become since receiving her new bed—she is now well rested and can move around and pull herself up in a sturdy environment.
"SMILE stepped in and helped us when no one else would," Tiffany says. "It's awesome. It totally is."
