My own secret superpower: Jocelyn’s journey with C3 glomerulopathy
When Jocelyn Bush was 13, she started noticing minor swelling around her eyes. Not thinking much of it, she went about her life as usual. But by the start of her freshman year of high school, the swelling had spread all over her body. As a multisport athlete in soccer, track, and volleyball, not being ... Read More about My own secret superpower: Jocelyn’s journey with C3 glomerulopathy
Finding answers and care for a rare movement disorder: Aisha’s experience with deep brain stimulation
For nearly a decade, Aisha’s family looked for answers about a disease they couldn’t name. Born in Bahrain in 2006, Aisha was about a year old when her mother, Mariam, noticed involuntary movements in her face and lips. As she grew, Aisha showed delays in walking, speech, and other developmental milestones. Despite years of appointments ... Read More about Finding answers and care for a rare movement disorder: Aisha’s experience with deep brain stimulation
العثور على إجابات ورعاية لاضطراب حركي نادر: تجربة Aisha مع التحفيز العميق للدماغ
لقرابة عقد، بحثت عائلة Aisha عن إجابات لمرض عجزوا عن تسميته، بدأ منذ طفولتها المبكرة. ولدت Aisha في البحرين عام 2006، وكانت تبلغ من العمر عامًا واحدًا تقريبًا عندما لاحظت والدتها، Mariam، حركات لاإرادية في وجهها وشفتيها. ومع نموها، ظهر لدى Aisha تأخر في المشي والكلام والجوانب التطورية الأخرى. ورغم سنوات من المراجعات والفحوصات الطبية ... Read More about العثور على إجابات ورعاية لاضطراب حركي نادر: تجربة Aisha مع التحفيز العميق للدماغ
‘We’re gonna start over’: Finding the right care for Remi’s aspiration
At almost 3 years old, Remi is confident, independent, and a bit headstrong. “She wants to do everything on her own,” laughs her mom, Gabrielle. “If we even try to dress her or put on her shoes, she tells us, ‘Only myself’ — she doesn’t want any help.” It’s a determined mindset that Gabrielle and ... Read More about ‘We’re gonna start over’: Finding the right care for Remi’s aspiration
Living fully: Kristin’s life with blue rubber bleb nevus syndrome
More than 25 years ago, I spent 11 hours in surgery while a surgeon removed hundreds of abnormal blood vessels from my body. A lot has happened since. Today, I’m a mom raising two driven kids: a daughter who is a skilled athlete, and a son who’s taking two math classes just for fun. I ... Read More about Living fully: Kristin’s life with blue rubber bleb nevus syndrome
Accepting kindness and happiness: Ways Spencer’s family navigated his heart transplant
Spencer Brock and his family recently vacationed in Ireland. They caught up with aunts, uncles, and cousins, and Spencer enjoyed visiting playgrounds, an amusement park, and a zoo. It was a dream-come-true trip in many ways. In October 2024, only six weeks after he was born, Spencer was diagnosed with restrictive cardiomyopathy, a severe disease that ... Read More about Accepting kindness and happiness: Ways Spencer’s family navigated his heart transplant