When this baby girl stopped breathing for a moment, her heart suddenly stopped. Naturally, the family did all they could to bring their treasured toddler back. But then they were faced with the hardest decision they would ever have to face.
Sadie Hopwood is a little girl with a remarkable story. Indeed, she hasn’t had the easiest start in life by any means. In fact, this toddler has been very sick ever since she was just a few months old.
Her family noticed that she wasn’t eating and so they took her to Brenner Children’s Hospital right away. Doctors originally thought she had a rare genetic disorder called spinal muscular atrophy (SMA).
However, Sadie underwent even more tests and it turned out she didn’t have SMA after all. In fact, she had something even rarer. She was later diagnosed with a protein malfunction called AGTPBP1.
It’s such a rare disorder that only four people worldwide have been diagnosed with it. And little Sadie is the only U.S.-based sufferer. Sadly, the symptoms of the disorder are severe.
In fact, Sadie is unable to walk or eat on her own. She also needs help with her breathing. All of this means she requires 24-hour care provided by her family and nurses.
Then, in February 2017, something terrifying happened. Sadie got some mucus stuck in her throat and developed breathing difficulties. Then, she stopped breathing altogether. Her grandmother, Tiffany Hopwood, was there when it happened.
“She stopped breathing and we ended up having to do CPR,” she told Fox 8 News in May 2017. Then, in what must have been a horrifying moment, Sadie’s heart stopped. “We thought we lost her,” added Tiffany.
Thankfully, she made it through the terrifying episode. The next few months were spent at Duke Children’s Hospital, where Sadie was hooked up to various machines. The family were then faced with some very difficult decisions.
“We had a very serious discussion about turning the machines off and just letting her go, that was a very hard night for our family,” Tiffany told Fox 8 News. But, in the end, the Hopwoods decided not to do that.
Although doctors told the family they were “prolonging the inevitable,” Sadie’s family opted to give Sadie a tracheotomy to help her breathe. After that she was able to come home, where she’s since been happy, according to her family.
There is currently no cure for Sadie’s condition, but she’s playing an important role in research. A doctor in Germany is trying to crack the code, using some of Sadie’s tissue samples.
Tiffany said that the family don’t want her fight against the rare protein deficiency to be “in vain.” Indeed, they hope that doctors will be able to find a way to treat the condition.
Sadie’s family has established a strong social media campaign as a way of raising awareness of the condition. They set up a Facebook page called Saving Sadie which asks people to “leave words of encouragement or advice.”
It’s also a place where followers can get updates on Sadie’s condition. Many thousands of people have learnt about her battle in this way. Indeed, some of them have even reached out to the Hopwood family directly.
Indeed, they’ve received cards and prayers offering support from all over the world. And the outpouring of love has been helping the family. “That’s really what got us through is cards and love,” Sadie’s mom, Logan, told Fox 8 News. “And her smile,” she added.
They’ve also been selling “Team Sadie” t-shirts, which supporters have been wearing all over the world. “People are sending us pictures from the lake and the Bahamas in their shirts,” said Tiffany.
Despite her illness, little Sadie has been keeping her family going. “She has definitely been an inspiration of hope,” said Tiffany. “She has taught me a lot about love and self-sacrifice and hope,” she added.
She may not be able to walk or talk, but Sadie still enjoys being taken to the window so that she can look outside. The toddler with a truly infectious smile also loves it when the family’s dog licks her face.
Although caring for Sadie must be very difficult, the family say that they look to God and their strong community for strength. “That makes it worth it everyday to keep trying,” said the proud mom of a truly one-in-a million child.