A mom's heart breaks when their baby hurts. Even the smallest bump or scratch can be hard to bear when you see a tear or hear a cry. The need to fix the problem is sometimes more overwhelming than the problem itself. But for one Baldwin County mother, the battle of a lifetime is underway, and thanks to a village, her baby girl is getting the very specialized and necessary care she needs.
Eleanor Faith Butler was born with osteogenesis imperfecta type II, a rare and serious form of brittle bone disease. She had multiple fractures at the time of birth and has since experienced dozens more.
With every break and every restricting treatment, Tasha Johnson has watched her baby suffer for two years. She's heard the prognosis, and she's read both heartwarming and heartbreaking stories of adults living with the disease. While there isn't a cure, Johnson has been determined to find the right treatment for her brave little girl.
After realizing that treatments and travel across the country for multiple specialists were too much for the family to afford, Johnson took to social media to see if maybe she could rally enough support. What happened next was nothing short of a miracle. People began donating items to auction, a fundraising event was held and T-shirts were sold. A fundraising page raised nearly $10,000. The family raised enough money to take Eleanor to Atlanta.
After multiple visits, a plan was made. Little Eleanor would have cervical spine surgery at Children's Healthcare of Atlanta. The family began looking ahead at what they would need for their family of six. Eleanor's father, Stewart Butler, would ensure everyone was settled in Atlanta before coming back to South Alabama to work and tend to Eleanor's siblings.
Just one day before leaving their Bon Secour home, a neighbor shared a photo of a massive rainbow spanning over the couple's home. Amid the clouds, Johnson said she received a message from God upon seeing the picture.
"Maybe some people would call it a coincidence. But for me, it felt like God was speaking directly to me," Johnson said. "God sees you. He has not forgotten Eleanor. All of His promises are still true, even when the road ahead feels scary."
The next day, the family was on their way to Atlanta.
The first procedure took place on Monday. Eleanor was placed in a halo traction with weights to prepare her for the surgery. The procedure was necessary but intricate, and the family worried whether the baby’s fragile skull could handle the halo, but she came through the procedure successfully.
After seeing her daughter with the restricting halo and under heavy sedation, Johnson said she cried for most of the day Monday. She said she wasn’t quite prepared to watch her baby in that state, but said she knew it was best.
“I’ve had time to process what I’m seeing and remind myself that while the halo looks scary, it is helping her,” Johnson said. “This is not something being done to her; it is part of what is being done for her.”
The halo has been helping to slowly straighten Eleanor’s neck before surgery.
Eleanor’s surgery is scheduled for Friday. While Johnson is anxious, she has faith that Eleanor will pull through the surgery. She said that although her baby’s bones are brittle, Eleanor is strong.
“This girl is such a fighter,” Johnson said. “I’m incredibly proud of her.”
Following surgery, Eleanor will be placed in the intensive care unit before eventually being moved to a regular pediatric floor.
Meanwhile, neighbors in Baldwin County have put together a meal train, and donations continue to come in for the family. Johnson said she has been overwhelmed by the love shown by friends, family and complete strangers.
“Honestly, it’s so hard to put in words when you’re facing something this big as a parent, you quickly realize you can’t do it alone,” Johnson told 1819 News. “The community that has rallied around Eleanor has been nothing short of extraordinary.”
For those who can’t give monetarily, Johnson said prayers have gotten her through one of the hardest times of her life.
“It reminds me that even in the hardest moments, there is so much good in the world, and I know that I may be sitting at her bedside, but this journey has been carried by an entire village that loves her, and I seriously could not be more grateful,” Johnson added. “Honestly, grateful doesn’t even feel big enough.”
Johnson continues to update supporters on social media. When her heart is broken, she cries. When she feels love from others, she cries. When she sees her tiny child fighting in the hospital bed, she cries. Still, she has hope and an overwhelming sense of community, thanks to those who have helped give little Eleanor the best life possible.
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