“A Smile and a Song”
If you are having a bad day, a smile and a song from Jordan will cheer you up right away. Jordan was born at 22 weeks weighing only 1.5 pounds. Twelve years later, he is a vibrant pre-teen with the biggest smile and the voice of an angel.
Amanda was first diagnosed with a chronic auto-immune disease called Ulcerative Colitis (UC) as a fourth-grader. During the first year and a half of her illness, Amanda experienced frequent flare-ups and had to endure many tests, scans and new forms of treatment. Amanda underwent two hospitalizations due to challenges with her digestive health.
“When Amanda was first sick but not yet diagnosed, it was very frightening and frustrating as to why she was suffering with the symptoms she was having,” said her mother, Gina.
Instead of allowing UC to be the focal point of her life, however, Amanda has shown incredible strength and maturity and has proven that it is only a small part of it.
In 2013, Khalil — a strong and independent 18-year-old — was returning from college with one of his friends when the driver fell asleep at the wheel and lost control of the vehicle. The car flipped 15 times. Miraculously, Khalil survived the accident, but he incurred a traumatic brain injury. When Khalil arrived at Children’s Specialized Hospital, he could not walk, talk, eat or sit up. The doctors found that Khalil also had a hematoma on the right side of his brain, a temporal skull fracture and fractured ribs.
“When I learned of Khalil’s accident, I was on my way to work. I was blown away by the news and my family was in shock,” said Khalil’s mother, Shanette.
Everyone knew that Khalil would have a long road to recovery ahead of him. During his six-month inpatient stay at Children’s Specialized, Khalil received phenomenal medical and nursing care and intense physical, occupational, speech and recreational therapy. His family received hope and reassurance during a critical time of shock and uncertainty. After treatment, Khalil was able to talk, walk, and do all his daily activities on his own.
Kinsey was born with Truncus Arteriosis, a congenital heart defect (CHD), and DiGeorge Syndrome, a deletion of part of the 22nd chromosome. These two conditions have caused a number of medical complexities and have presented several challenges for Kinsey and her family. Throughout her life, Kinsey has had five open-heart surgeries, various illnesses and surgeries unrelated to CHD, and many other hospitalizations. Kinsey also went on ECMO (advanced life support) as a teenager to combat a serious lung condition.
Without the help of cutting-edge treatments and devoted doctors, Kinsey simply would not be here. She has persevered through every health crisis she has faced. Moreover, Kinsey has impressed her medical staff with her unwavering courage and an optimistic attitude. Kinsey credits God and her family for giving her the strength to overcome each health crisis.
Reilly is an 11-year-old boy from Vermont. He was born healthy in 2006, but by his 2-year-old well-child visit, he was not talking and seemed unsteady. Reilly and his parents were referred to a neurologist and a few weeks later Reilly had a seizure, marking the beginning of a long journey.
When the first round of specialists had no answers, Reilly’s family traveled 4.5 hours from their home to Boston Children's Hospital (BCH). Hundreds of tests indicated that everything was normal, yet Reilly was still declining. In April of 2012, the team at BCH enrolled Reilly in a genome sequencing research study.
In 2012, Norah was born with spina bifida, a birth defect in which a baby's spinal cord fails to develop properly. She underwent surgery at Wolfson Children’s Hospital to close the hole at the base of her spine, and later required a second surgery to implant a shunt to drain fluid from the brain. According to her mom, Megan, the family didn’t know about Norah’s condition until right after she was born.
“To say we were in complete shock would be an understatement,” said Megan.
Further complications revealed there was another defect located at the base of her skull in the spinal cord. More surgeries followed, including the placements of a breathing tube to protect Norah’s airway, and a feeding tube to help her eat until she was able to swallow on her own.
Jack is a triplet who was born 14 weeks early, weighing only 1 pound 12 ounces. During his months in the Children’s Minnesota neonatal intensive care unit (NICU), he required the use of a ventilator for several weeks and had surgery to close a hole in his aorta. Jack was able to overcome many setbacks in the NICU and go home prior to his original due date.
Jack qualified for early intervention services based on his birth weight, and had a busy therapy schedule even as an infant. In addition, after receiving his autism diagnosis at the age of 3, Jack began attending a day treatment program for children with autism spectrum disorder. His hard work has paid off, and Jack has made immense progress in overcoming his challenges. He recognizes that he has had to put in extra work to get to where he is and is proud of his accomplishments.
At 21 weeks pregnant, Lynne was in for her routine ultrasound when experts noticed her son’s pinky was small. After having a follow-up test, it was determined that her baby, Will, would be born with a form of Down syndrome referred to at Trisomy 21.
“The first 24 hours were rough,” said Lynne. Afterwards, while speaking to a genetic counselor, she decided to “get it together” and began educating herself.
Now 3 years old, Will attends a typical school full-time, enjoys music, Elmo and pizza.
“He’s a typical toddler” she said when asked what it is like being a parent of a child with Down syndrome. “He’s running around everywhere, getting into everything that toddlers get into.”
Like all parents, Lynne’s goals for Will are for him to feel loved and respected and to grow up to be anything he wants to be. Will’s love for the little things and his knack for experiencing every moment like it’s the first time he’s seeing the world brings joy to everyone around him.
Sadie is a brave and big-hearted 10-year-old from New Hampshire. Born at only 32 weeks, Sadie was immediately taken by med-flight to Dartmouth-Hitchcock Hospital in New Hampshire. There, she was diagnosed with chylothorax — a lymphatic "leak" causing fluid accumulation in the lungs and skin — and spent six weeks in the neonatal intensive care unit (NICU).
When Sadie was about 6 months old, her pediatrician began to have concerns about her gross motor delays and referred her parents to a pediatric neurologist. After a year of MRIs, spinal taps and various other tests, she was diagnosed with Spastic Diplegic Cerebral Palsy (CP) — a brain-based movement disorder that affects her muscle tone, coordination and balance.
Layla’s mother had a normal, healthy pregnancy. It wasn’t until a little over an hour after her birth that Layla’s doctors informed her parents she was going to be having a “mild heart procedure.” Layla had been born with a congenital heart defect. Soon after that announcement, the transport team arrived to take her to Advocate Children’s Hospital for a total anomalous pulmonary venous return (TAPVR) repair.
Since her first surgery, Layla, who will be turning 6 in July, has been diagnosed with other conditions which have then led to multiple surgeries. Through the extremely difficult procedures and painful recoveries, Layla’s mom, Ivonne, describes what a hero she has become in their family.