After selling everything they own to pay for medical care for their daughter who has several life-threatening illnesses, a Michigan couple has nowmoved their family of five into a trailer so that they can all be together.
“People might think we have nothing, but that’s not true,” Margaret VanTongeren, 33, of Cedar Springs, tells PEOPLE. “We have each other. Yes, we’re facinga huge challenge, but we still have hope and a lot to be thankful for.
”Margaret and her domestic partner, T.J. Bunker, 33, are the parents of Daron, 11, Tommy, 2, and Ruby Pearl, 1, who was recently discharged from DeVos Children’s Hospitalin Grand Rapids after another lengthy stay.
Born deaf and blind with multiple holes in her heart, the toddler also has a deteriorating brain, glaucoma, obstructive sleep apnea and chronic lung disease. Cared for by more than a dozen doctors since her birth, she wasn’t expected to live more than a few hours, but she has surprised all of the experts.
Ruby Pearl is a “rare jewel” and an inspiration, says her father, who ran a recycled clothing and housewares store with Margaret until they had to sellit two months ago to pay for bills not covered by theirhealth insurance.
“You never know what tomorrow is going to to bring, so we keep fighting right alongside her,” T.J. tells PEOPLE. “There are still many unknowns about Ruby, but she is alive and a little warrior, even though the odds were stacked against her since birth.
”Margaret had a hunch that something was wrong with Ruby at her first ultrasound, when the pictures on the monitor were entirely black.
“It turned out that I had low amniotic fluid,” she says,“but nobody knew why. When she was born (weighing 4 pounds, 10 ounces), Ruby had club-looking feet and claw-looking hands and she started having seizures. We learned that she didn’t have vision or hearing and that she’d need surgery right away to repair holes in her heart. Our own hearts felt broken. It was a very hard time.
”In and out of the hospital for the first year of her life, Ruby required 15 blood transfusions for anemia and was declared near death multiple times.
“This past May, when she had pneumonia, they had us call in our family to say goodbye to her, ” Margaretrecalls. “They showed me the room they use for babies to die in and I just broke down. It’s still hard to think about it – it was the worst moment of my life.
”Incredibly, though, when Ruby was taken off life support, she began to breathe on her own.
“I don’t know what else to call it besides a miracle,” Margaret, who is now documenting Ruby’s story onFacebooktells PEOPLE. “She still struggled a lot after that, but she pulled through again. And now we’re finally able to take her home with us this week. It’s a huge milestone.”
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