AUSTIN (KXAN) — Emmy Ochoa walks toward the KXAN photojournalist set up in her living room. Typically, people young and old shy away from a giant video camera and a tall tripod. But not Emmy.
“Boo!” the 5-year-old says with a smile, and then heads on over to her mini-trampoline and starts jumping up and down.
Her mom, Maggie Haynie, laughs. It didn’t take Emmy long to warm up to the strangers who have invaded her play room to learn more about the vivacious child.
“She is an anomaly, a very special little girl,” said Haynie. “She is the light of my life, and she is incredible. She’s my little fighter. “
Emmy has already lived three years longer than doctors expected. Emmy has an enlarged heart which doctors discovered when she was 18 months old. While her family was taking the steps necessary for a heart transplant, doctors discovered Emmy also had Sanfilippo Syndrome, a rare genetic condition that causes fatal brain damage.
The terminal diagnosis also took the chances of Emmy’s heart transplant away.
That’s when Cyndy Teas, a nurse with Hospice Austin came into her life, and started caring for her at home.
“She’s in a very fragile health state,” said Teas. “Every small event like a cold can end her life because she has just a piece of a heart basically.”
Teas and Hospice Austin, a non-profit dedicated to end-of-life care for all ages, provides pain relief and medical support for Emmy and her entire family. But in the beginning, Haynie had her doubts about hospice care.
“I remember when we first got on I was like, ‘this is a constant reminder that the end is near,'” said Haynie.
Another mother from Wimberley, Chantal Pittman, was also skeptical about what hospice care looked like.
“I think when you hear [the word] hospice, it’s sickening it’s frightening,” said Pittman. “You think old people with Alzheimer’s in their homes.”
That was not Pittman’s experience at all. Hospice Austin came into her family’s life to help her son, Gunnar.
“Gunnar was a beautiful little boy,” said Pittman. “He was so engaging, and he would just pull people into him with his shining light.”
But when he was about a year old, his family noticed he wasn’t developing normally. Gunnar was diagnosed as special needs, and then doctors discovered a cancerous brain tumor.
“The doctor sat down and said, ‘it’s so rare, but I really can’t recommend any treatment for your son,’ said Pittman. ‘It’s going to be brutal for him. It’s going to be torture.'”
The doctor said the treatment would likely only extend his life for six to eight weeks.
“My husband and I decided we weren’t going to torture our son, we wanted to give him just really great memories and just make every moment count,” said Pittman.
Teas was also Gunnar’s nurse. She started building a relationship with the little boy and the Pittman family.
“We wanted to create the best environment possible,” said Teas.
Pittman said by choosing to be home, instead of a hospital, Gunnar was able to be with his family and do all the things he loved to do, which included spending time outside. One of the biggest reliefs — she didn’t have to choose between spending time with Gunnar or his older sister.
Pittman vividly recalls the day Gunnar took his final breath.
“We were able to wake [his sister] up, she was able to say goodbye and it was very peaceful,” said Pittman. “He died in his own bed, in his mother’s arms.”
Teas said hospice is not giving up, hospice is giving control.
Emmy is still taking things day by day.
“My hope for Emmy, that’s a tough one,” said Haynie fighting back tears. “That we can keep her as happy as she is now until she’s not with us. I think that is the only thing I can hope for — and she is happy.”
More about Hospice Austin
As the first hospice in Central Texas, Hospice Austin was established more than 30 years ago by a group of doctors and concerned citizens for the sole purpose of serving families. Since then, the nonprofit has provided end-of-life care to any person who needs it, regardless of the complexity of the illness, cost of care or a patient’s ability to pay.
Hospice Austin says its resources are not used to benefit shareholders but instead go back into services that benefit the patient and their family.
Beauty of Life 2019
KXAN has partnered with Hospice Austin over the last five years to support their annual ‘Beauty of Life’ event which happens in November, which also national Hospice and Palliative Care month.
KXAN investigative reporter Erin Cargile has served as the emcee for the last two years. It is the biggest fundraiser of the year, and this year the nonprofit raised more than $185,000 in one day! Those who attend can purchase items from local boutiques, and then enjoy lunch and a guest speaker.
Photojournalist Chris Nelson contributed to this report.