Archive for complex care
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
Thanks to Carter and his family, people are talking about spastic paraplegia
Nine-year-old Carter may be the most devoted — and popular — sports fan in his Connecticut town. “He loves all sports,” says his mother, Natalie. Whenever one of Carter’s buddies has a game, Natalie’s phone lights up with texts asking if he can attend. As his friends play, Carter cheers and gives high fives from his ... Read More about Thanks to Carter and his family, people are talking about spastic paraplegia
Going back to school with a chronic condition
Going back to school can be a time of excitement for many families: Your kids are looking forward to reconnecting with their friends — and you’re looking forward to watching them learn and grow. But for caregivers of children and teens with chronic or complex conditions, preparing for a new school year involves much more ... Read More about Going back to school with a chronic condition
A surgeon’s last-minute trip to Sri Lanka reduces children’s wait for needed heart repair
Last year, Dr. Christopher Baird got an offer he couldn’t refuse — something that happens often as he travels the world to demonstrate the heart surgery techniques he has learned and developed at Boston Children’s Hospital. At a heart surgery symposium in India, Dr. Baird had just performed a complex type of aortic valve reconstruction ... Read More about A surgeon’s last-minute trip to Sri Lanka reduces children’s wait for needed heart repair
Homecoming: Jack’s complex care brings a family back to Massachusetts
Georgia and her husband, Keith, moved to North Carolina from Massachusetts in 2015 with a dream of building a house and starting a family. Their plans changed, however, when their son Jack was born in 2017 with severe health complications, including a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome and a rare ... Read More about Homecoming: Jack’s complex care brings a family back to Massachusetts
From Florida to Boston and back again: Reagan’s liver transplant journey
Reagan, 18, is gearing up for her freshman year of college this fall, and she has a solid idea about her future career. “I hope to become a transplant nurse or a child life specialist,” she shares with a smile. Her inspiration to enter this field of medicine comes from her experiences with the care ... Read More about From Florida to Boston and back again: Reagan’s liver transplant journey
Calm through the storm: Connor’s ulcerative colitis journey
When you meet Connor today, he’s a confident 13-year-old who is incredibly laid back when he speaks about his complex medical condition. This school year, he plans on playing basketball and running track. “I like hanging out with my friends and traveling — now I can do all these things without being in pain.” However, ... Read More about Calm through the storm: Connor’s ulcerative colitis journey
Family first: Nolan and Uncle Jon’s living donor kidney transplant
Nolan and his uncle Jon are both tall and blonde, but they now have something more in common: The two have an unbreakable bond, thanks to a selfless —and lucky — gift that changed Nolan’s life forever. The first year after Nolan was born, his primary care physician ran some blood work to try to ... Read More about Family first: Nolan and Uncle Jon’s living donor kidney transplant
New online peritoneal dialysis simulator gives the power of education to patients
For years, patients who need peritoneal dialysis, a form of home-based treatment for kidney disease, have had to educate themselves about the approach. “Many families have never heard of peritoneal dialysis prior to their child’s diagnosis,” shares Dr. Deborah Stein, a nephrologist in the Division of Nephrology at Boston Children’s Hospital. The idea of peritoneal ... Read More about New online peritoneal dialysis simulator gives the power of education to patients