Maia and Cathy work on a painting
Aspiring artist Maia already has more talent in one finger than many can say they have in their whole body.
Like any 11-year-old might be found, she is propped up in bed, a computer screen in front of her. Tonight she is preparing for her weekly art lesson, navigating through a digital art program to open a blank canvas.
In many ways, Maia is a typical pre-teen. Around her room, there are posters, artwork and corkboards filled with photos of family and friends and inspirational quotes. She has an affinity for brightly-colored socks, often worn mismatched. An animal lover, her eyes sparkle in delight when she talks about encounters with her favorites.
Maia, however, is far from being average. To meet her you might say she is one in a million. A more accurate description would be she is one in 20,000 – the number of children diagnosed with spinal muscular atrophy (SMA) condition each year. Maia’s condition is known as Werdnig-Hoffmann disease, a severe type of SMA. As her condition progressed, slowly she lost the ability to move her body piece by piece. A ventilator whirrs in the background helping her breathe and her atrophied legs are elevated above the medical bed. To help with the necessities of daily living, she received routine care from Suncoast Hospice, a member of Empath Health. This included equipment maintenance and other needs that might arise.
Fortunately, Maia has been doing well enough that she has recently been able to transition out of hospice care into Partners in Care: Together for Kids, a palliative care program offered by Empath Health and supported by Medicaid. This program continues to offer nursing and personal care and symptom management, as well as a variety of emotional support services for Maia and her family.
This support has come in a variety of meaningful experiences for Maia. She was able to visit a local stable and interact with horses and a local group brought a menagerie of reptiles to her home. When Maia’s family expressed a desire to bring art lessons to her, Empath Health searched for a volunteer with the skills to help.
Maia’s ice cream-inspired self-portrait
Weekly art sessions are now a highlight for Maia. When she still had use of her arms she would create pencil sketches, but with her movement now limited to just her thumb, she needed to learn a whole new way of creating art. Under the guidance of Empath Health volunteer Cathy Lasky, Maia has been learning art concepts such as how to use photography to enhance her work and how to incorporate text.
Though art is an important subject for Maia, she depends on her computer for much more than those projects. Since she is unable to attend regular school, her classes are completed online. It is her link to the outside world. When that link fails, everything comes to a halt.
Fortunately, when these interruptions happen Empath Health has been there to get her back on track. When her computer stopped working, the IT department stepped in to help facilitate the repair. Soon Maia was back in her normal routine.
As an artist, Maia hasn’t let her limitations stop her. For everything else, she has an expert team backing her up.
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