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Suncoast Hospice Foundation’s Saturday fundraiser celebrates life

Mark Parker

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Maia, 13, became a Suncoast Hospice patient at 2 years old. The story of how the organization has helped her live a fulfilling life will be told at the Suncoast Hospice Foundation's ball March 26. Photos provided.

Pinellas-based Suncoast Hospice is a member of Empath Health, a nonprofit network providing integrated care for those facing chronic or advanced illnesses. The philanthropic arm for the organization – the Suncoast Hospice Foundation – helps support patients and their families through each step of their journey.

The foundation’s signature annual fundraising ball is Saturday (March 26) at the Vinoy Renaissance St. Petersburg. Amid the evening’s festivities, organizers look forward to sharing a lifelong patient’s touching story to help illustrate what makes Suncoast Hospice and Empath Health unique.

Kathy Rabon, executive director of the Suncoast Hospice Foundation, said the organization’s mission is to provide life-long care regardless of age, condition or the ability to pay.

Saturday’s story is that of 13-year-old Maia. She is an accomplished artist who suffers from spinal muscular atrophy (SMA). SMA is a genetic disorder characterized by weakness and the wasting (atrophy) of the muscles a human being uses to move.

While SMA is incurable, treatments and support are available to help manage the symptoms and provide the best possible quality of life. According to Kathy Rabon, executive director of the Suncoast Hospice Foundation, that’s what the organization has tried to accomplish since Maia became a patient of Empath Health’s Together for Kids program at just 2 years old.

Maia has lost almost all of her ability to move, but Rabon said her self-confidence and positive outlook on life are unwavering.

“And she believes that she would not be the person she is without her disability,” she added. “But the other thing about Maia, she’s an acclaimed artist, and she is creating artwork with her left thumb.”

Rabon said Maia received awards for the artwork she created with just her thumb and a computer trackpad. Once her drawings are complete, Maia adds layers of color and other media through specialized software. A Suncoast Hospice graphic designer voluntarily assists Maia with her creations.

In addition to Maia’s life-long nursing care, the organization provides a social worker and other wraparound services. A teenage volunteer even helps Maia with her math homework.

“She is living her life with us,” said Rabon. “As is her family, because that’s the difference between hospice and regular medical care.

“We provide full life care from the onset of a chronic illness through the family’s grieving. We provide the medical, the emotional, the social – we tend to every aspect of not only the patient but the entire family.”

That kind of full-service care does not come cheap, and typical medical providers do not cover many of the costs, said Rabon. The Suncoast Hospice Foundation helps provide care for Empath Health’s nearly 4,000 patients throughout Pinellas County, she said, to the tune of $8-10 million annually.

One of the ways the foundation raises the nearly $10 million needed to provide that level of care is through its annual ball. Suncoast Hospice is celebrating the 20th anniversary of the ball this weekend, which has raised over $5 million for patients like Maia throughout the last two decades. Rabon said Saturday’s goal is $300,000, and organizers expect around 300 people to attend.

She said many events, especially fundraisers, seem to have a relatively short lifespan of around 10 to 12 years.

“So, for this event to be celebrating its 20th anniversary is really quite a monumental opportunity for us.”

Rabon explained that state guidelines mandate hospice patients must have a prognosis of fewer than six months to live. However, she said many patients do not follow that typical pattern. She said Empath Health’s goal is to treat everyone, regardless of age, condition or the ability to pay.

In addition to fundraising, Rabon said the foundation hopes to spread community awareness of the program’s mission to provide full-life care for all through the gala.

“Particularly stories like Maia’s,” she added. “That are so touching and not as widely recognized as more typical hospice patients might be.”

For more information on Suncoast Hospice, visit the website here.

 

 

 

 

 

 

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