Latest news with #GoldenharSyndrome
CBS News
6 days ago
- Health
- CBS News
Teen receives life-changing care at Children's Hospital of Philadelphia for rare congenital condition
A 17-year-old from the Middle East is being celebrated by the Children's Hospital of Philadelphia for her bravery after she endured dozens of surgeries. July is Craniofacial Awareness Month, a time dedicated to educating people about congenital differences that impact thousands of children and families every year. Shaikha Salem was born in the United Arab Emirates with a rare congenital condition called Goldenhar Syndrome, which causes severe facial asymmetry and breathing problems. She's been around the world, from London to Asia, being treated, and finally ended up in Philadelphia at CHOP. "I've had 25 surgeries in total," Salem said, "but by the age of 11, I had already 19 surgeries." The 17-year-old will be back in August for another round of surgery. Salem had major jaw and airway reconstruction at CHOP in the summer of 2024. "Actually, I'm excited because the result is going to be like a dream come true, so I'm happy," she said. Dr. Jesse Taylor led the surgery that makes it easier for Salem to breathe, eat and speak. "I am really, really excited about this surgery because I feel like we have a good plan, and she's such an amazing young woman," Taylor said. "I feel lucky to be a part of her life." Now at age 17, Salem said she feels lucky to have found the team at CHOP that's transforming her life. "Every time I go in, even if I was, let's say, in pain for any surgery, I would go in and I'd come back with a huge smile, knowing there is an end to all of this. After every long journey, there is always going to be a happy point," she said. Salem said after all the medical interventions and surgeries she's had, she's considering a career in nursing.
Yahoo
08-05-2025
- Health
- Yahoo
Little girl diagnosed with rare syndrome after being born without her left ear
A little girl was diagnosed with a rare syndrome after being born without her left ear. Gaja Stawska, 22-months-old, has Goldenhar syndrome - an extremely rare condition characterised by the abnormal development of the eye, ear and spine. Due to Gaja's condition, the S-shaped curvature of her spine makes it challenging for her to maintain balance and walk. She has been having physiotherapy since six weeks old and is now able to walk. Her mum, Marita Stawska, 34, is hoping to raise £108,000 for a CT scan and ear reconstruction surgery in the US. To support Gaja you can donate here -
Jordan News
15-03-2025
- Health
- Jordan News
Ibn Al-Haytham Hospital Successfully Performs Complex Surgery for Child with Rare Syndrome - Jordan News
In a medical achievement added to the distinguished record of successes at Ibn Al-Haytham Hospital, the medical team, led by Dr. Hikmat Al-Omari, a specialist in oral, maxillofacial, and jaw surgery, successfully performed a complex surgery on a child suffering from Goldenhar Syndrome, a rare condition that affects the development of the face and jaw. اضافة اعلان During the procedure, the lower jaw was reconstructed by implanting a part of the rib to compensate for the lost bone, which helped restore anatomical symmetry and achieve ideal functional and cosmetic results. This accomplishment reflects the advanced level of Ibn Al-Haytham Hospital in treating rare and complex cases, thanks to specialized medical expertise and the use of the latest surgical techniques to ensure the highest standards of healthcare for patients.
BBC News
18-02-2025
- Health
- BBC News
Goldenhar Syndrome: 'Perfect' baby born with extremely rare condition
They say it takes a village to raise a child which could not be more true for Rhys James and his partner Grace who recently welcomed their son, Vinnie. The three-month-old was born with Goldenhar Syndrome, an extremely rare condition affecting his face, heart and breathing. The condition means Vinnie was born with one eye and a small jaw, as well as one of his ears being on his cheek. "It's such a big deal to most people but it's inside that counts. His soul is so perfect," said than £3,000 has been raised online to help fund trips to London where the couple hope Vinnie will be given a prosthetic eye. Rhys added: "It's the biggest blessing we've ever received and we can't thank everyone enough.""Obviously we had no knowledge of what it was and what it meant," said Rhys, from Bridgend, remembering the moment they received the diagnosis."It was scary because we just didn't know where we were going to go from there." Through charities and social media groups, Rhys and Grace have only been able to track down one other family impacted by the condition. "In one of the groups, there's another baby there who's got Goldenhar Syndrome - he has one eye and they were told that they were the only one in the world."Vinnie's care means the family are often away from home, spending time at Great Ormond Street Hospital in James said he would "probably be in debt" as a result of the trips, if it was not for the donations. "Money can dwindle really fast when you've got to be travelling around all the time."Mr James said the support from his church had made the biggest difference. The newborn also has a tracheostomy and is fed through a tube meaning he requires around the clock care from his loved ones, including his "caring" six-year-old sister, Mayah."She's getting used to the care. She'll watch and learn. She's so caring." When Vinnie was born Mayah had questions about her baby brother's condition, but quickly understood, said Mr James."I don't think she sees him any different to anyone else. Despite having a lot on their plate, Rhys said he and his partner were determined to do all they can to spread Vinnie's story."He's changing so many people's lives, including ours, bringing so many people together."He's already got a charm about him."I just want him to inspire people."
