Latest news with #HeterotaxySyndrome
Yahoo
02-05-2025
- Health
- Yahoo
North Alabama infant needs heart transplant
MORGAN COUNTY, Ala. (WHNT) — Two parents from Morgan County have spent every day of their daughter's life by her side in a Birmingham hospital. It's been seven long months, but they say they will stay until their daughter can get a heart transplant. Moon Gate sculpture unveiled in Huntsville McKayla Raper told News 19 that the family's stay at Children's of Alabama started when her daughter, Ivey, was born on October 10, 2024. 'She's a real miracle, she really wasn't supposed to be here right now,' McKayla told News 19. Her husband and Ivey's father, Chris, said he gives a lot of credit to the team of doctors and nurses at Children's. 'When she was born, they did scans on her and realized she was a lot sicker than what they thought she was,' McKayla said. The Beer Dilemma: How beer almost cost Huntsville the Stars When McKayla was pregnant, they quickly learned that Ivey had Heterotaxy Syndrome. It's a rare condition where organs are formed abnormally or are in the wrong position. Ivey's parents said in addition to that, she was born with a congenital heart defect. Right now, Ivey is supported by a Ventricular Assistive Device (VAD). However, she really needs a heart transplant. McKayla said doctors 'ultimately decided she would need a heart transplant to survive.' Ivey has been on the waiting list for a new heart since November 20. Her dad, Chris, said that Ivey has maintained good health since then and hasn't had to be removed from that list. The couple remains hopeful that their daughter will get a transplant soon. 'They say any day now, so we'll see,' McKayla said. However, it's already been a long journey for the family. In addition to having spent more than 200 days away from their home in North Alabama, they've had to make other sacrifices to be close to the hospital. 'I was a nurse at Huntsville Hospital, but I quit my job so that I could stay down here with her full time,' McKayla said. 'I mean it's hard, but there's no place I'd rather be than with her.' Chris said he changed jobs during the ordeal and now works remotely, so he's able to stay by Ivey's side in the hospital. The family said they feel lucky to have a great support system of family and friends, however, there are some ways that the community can rally behind them. 'Anything at all is helpful,' Chris said. 'We're not going to sit here and ask for money or this or that. If you could just say a good thought or prayer, that's the main thing.' 'If you feel inclined to send something, we do have t-shirts that we just recently launched for a fundraiser,' Chris said. The t-shirt design brings awareness to Congenital Heart Defects and Ivey's story while raising money for the family. Chris said they also have a GoFundMe set up. However, he made it clear that they are 'not in any way asking for anything.' The Rapers said they couldn't ask for a better care team for Ivey at Children's while she waits on her heart transplant. 'The nurses and the doctors here are great and they love Ivey,' McKayla said. 'They take good care of her.' The Rapers said they aren't sure how long it will take to get a transplant scheduled. Due to Ivey's age, there aren't as many available donors. However, they do say that she is near the top of the list. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
NBC News
17-04-2025
- Entertainment
- NBC News
Surprise call from 'The Rock' brings 6-year-old boy joy in his final days
Kane Bolan never went anywhere without his magical fishhook from Disney's "Moana," except for school. The 6-year-old from Minnesota was obsessed with the film, especially the character Maui voiced by Dwayne "The Rock" Johnson. His twin brother, Dennis, also shared his love for the movie. But behind Kane's "Moana" stuffed animals and Halloween costumes, he faced unimaginable challenges. Kane was born with a rare condition that required dozens of hospital visits, a pacemaker and a daily struggle to survive. 'He had a condition called Heterotaxy Syndrome, and it messes up a lot of your internal organs,' the boys' mother, Christine, told NBC affiliate KARE 11. 'Kane was born with a bad heart, and we kind of just dealt with that his whole life.' With Heterotaxy Syndrome, organs such as the heart are in the wrong place in the chest and abdomen, according to Nationwide Children's Hospital. It is reported that 1 in 10,000 births are affected worldwide. After lifelong medical treatment, Kane coded one day in early March, KARE 11 reported. Doctors performed CPR for 91 minutes, but Kane never fully recovered. Doctors and the Bolan family were preparing for a risky final procedure to save Kane on March 11 when there was a surprise incoming call for him — it was from Maui himself. "Hey Kane!" Johnson said to Kane via video call. "This is 'The Rock,' aka Maui from "Moana."" Johnson and Dennis together sang Maui's popular song "You're Welcome," to Kane, who did not have his voice at the time. The heartwarming moment was made possible through Make-A-Wish. "You inspire everybody around you and including me, too," Johnson told Kane as he lay on his hospital bed wearing his favorite Moana friendship bracelets. "I could see why you're so incredible and amazing." Left with this unforgettable gift, Kane passed away a week later on March 18. "Despite not being able to speak when we met, I FELT this little boy's SMILE, and felt this little boy's MANA," Johnson wrote in an Instagram post for Kane on April 6. In the movie, mana refers to a spiritual power or life force. "His mana was beautiful. His mana was strong," Johnson wrote. As hard as it is for Christine to think about that special day, she is grateful for the memory it gave Kane. 'I wanted people to see how happy he was,' Christine told KARE 11. 'Despite all of his struggles, what a sweet boy he was. I was very appreciative they put that tribute out, but I couldn't have imagined the response it would get.'
