October 22, 2018

A Story from our Foundation: Sarah Sullivan

Sarah Sullivan, 35, has seen over 200 different doctors in her lifetime. She had her first open heart surgery at just 2 months old.

Sarah has never given up on life despite several critical surgeries, a rare blood disease Mayo Clinic named the “Sarah Sullivan Syndrome”, and devastatingly low levels of oxygen. She continues to have an upbeat spirit and is surrounded by a family that loves and cherishes her.

A year ago, Sarah and her mother Delores traveled to Des Moines for a doctor’s appointment. When the doctor told Sarah her only option was a tracheostomy, she and her mother had to make a big decision. They chose to live the rest of Sarah’s life enjoying every moment in the coziness of their own home, receiving care and support from the hospice team at EveryStep (formerly HCI Hospice Cares Services). “You expect life to end for older people…but not a young person,” said Delores.

While in the care of EveryStep, Sarah has become dependent on a trilogy ventilator machine. Her lungs are in critical condition and her body retains extremely toxic levels of carbon dioxide. The trilogy ventilator machine is essential to Sarah’s quality of life, allowing her to breathe comfortably and maintain her oxygen levels.

Medicaid does not cover this type of care. Fortunately, the EveryStep Foundation has been able to fund the expenses. 

“Without this machine, I start to see different colored lights, and it becomes extremely hard to breathe, then everything just goes black,” Sarah said. Now, every breath is easier, thanks to donor support to EveryStep Foundation.

Not only has our organization played a critical role in Sarah’s comfort, health and quality of life, the EveryStep team has helped her find joy. In the winter of 2017, the EveryStep Foundation paid to have Sarah’s sister and her family flown in for the holidays. It was the first time in 20 years the family had been together on Christmas, and it was a huge surprise for Sarah! “We will be forever grateful to the hospice care staff for all they do for us…they are our family now,” wrote Delores.

Sarah continues to scrapbook, make a weekly visit to Hobby Lobby and loves 
jamming out to music — “anything with a good beat,” she says. Sarah’s story is one of many where our staff go above and beyond to live our mission and provide compassionate care. Sarah is one incredible woman, and we are honored to serve her.