Hope shines for families in Little Treasures
“We wanted to care for William in a way that felt comfortable. We weren’t going to be able to save William’s life, but we wanted to fulfill it – at home, surrounded by family. He enjoyed being part of the family. He had a full life.”
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“All the care choices we made – his quality of life, keeping him at home with his family – gave me the hope to fulfill William’s life to the best of our ability,” Oralea Marquardt of Palm City said, looking back on seven years of Little Treasures’ pediatric hospice care for her son.
William had been enrolled in the Little Treasures’ pediatric hospice care program. Teen-ager Tyler McLaughlin of Port St. Lucie participates in the other half of Little Treasues, its pediatric palliative care program, and he has something strikingly similar to say.
“I didn’t have a lot of hope,” said Tyler of his life before he began receiving care from the Little Treasures team. “I was going downhill. I never expected everything that happened could happen.”
Little Treasures seeks to improve the quality of life for children and teens with serious illnesses – and for their families as well. We provide end-of-life hospice care for children like William, and in Tyler’s case our team joins with the statewide initiative Partners in Care – Together for Kids to provide sensitive, compassionate, and expert palliative care specific to younger patients.
Oralea and Rod Marquardt first became concerned about William at 9 months when he wasn’t doing things that they thought he should be doing. Their pediatrician at the time thought theirs were just the usual parental worries. Boys develop more slowly, he assured them.
But five months later, William’s development seemed to be declining. His pediatrician ordered tests revealing that at 16 months William had the development level of 6 to 9 months. He was diagnosed with a GM1, a neurological disorder similar to Tay Sachs disorder.
In 2007, the Marquardts came to Treasure Coast Hospice seeking to admit William for hospice care. The family – William, Oralea and Rod, sister Kyla, and brother John – became the pioneers of Little Treasures’ pediatric hospice care.
“We wanted to care for William in a way that felt comfortable,” Oralea said. “We weren’t going to be able to save William’s life, but we wanted to fulfill it, at home, surrounded by family. He enjoyed being part of the family. He had a full life.”
“He was just part of the family,” Kyla recalled. “I didn’t realize not every family had a William.”
Then one night, Rod remembered, he and William shared a father-son night, watching television in the family room had become William’s room. The next morning, on a day that began like an ordinary day, William quietly died.
“As a parent, you always fear that moment,” Oralea said. “But it was so very peaceful. I feel like it was his gift to us because we had cared for him. We didn’t have to make those difficult decisions when death approached; he just quietly left us.”
A terminal diagnosis didn’t bring Tyler McLaughlin to Little Treasures, but he might not have been far away from one. As a young boy, he’d had a brain tumor removed, resulting in a wide range of secondary conditions, including diabetes and swelling of his limbs.
A couple years ago he had surgery on his foot. Unfortunately, the surgery was on the wrong foot. That left him wheelchair bound, virtually shut in, blood sugar skyrocketing, feeling hopeless and, as he said, going downhill.
Then he was referred to the Little Treasures palliative care program. Now he meets with a social worker twice a month for emotional support, and he meets with a registered nurse four times a month. He also meets with a music therapist twice a month, and they translate his poems into hip-hop songs.
“It’s fun,” Tyler smiles.
Tyler also meets four times a month with a Little Treasures child life professional, who helped motivate him to exercise and lose weight, resulting in greatly improved lab results. He’s no longer going downhill, though uphill can sometimes be difficult.
“I get down sometimes,” he acknowledged, “But I just try to focus on doing something besides feeling down.”
“I’m happy now,” he said. “I might still be in pain, but I’m happy.”
Now Tyler has hope, a future, and a goal: to be out of the wheelchair by the time he turns 21.
(Partners in Care – Together for Kids (PIC-TFK) is a state program offering specialized palliative care services through approved local hospices. These services are available by referral from the Children’s Medical Services Network. PIC-TFK is a partnership between the Agency for Health Care Administration, the Florida Department of Health, and Florida Hospices and Palliative Care Association.)
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If you think your child or teen would benefit from the Little Treasures program, or if you just have questions for us, please give us a call at 772-403-4404.
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