It’s a situation few parents ever imagine during a healthy pregnancy. Yet there Laura and Jared Maxwell were, waiting anxiously in the Division of Genetics and Genomics at Boston Children’s Hospital as their infant daughter, Reagan, under went a barrage of tests. After their little girl had been born with a congenital anomaly just a few weeks earlier, physicians wanted to make sure that she didn’t have other related genetic syndromes that could affect her heart, kidneys and other organs. “It was one of the most terrifying days of my life,” recalls Laura. …
The other day, I sat in a café and watched as a mom walked in with two kids in tow. I didn’t notice much while sipping my coffee, but soon the family’s conversation broke my train of thought. The girl, maybe 4, was talking to the waitress about the menu. She wanted extra bacon and a muffin with no nuts because of her allergies. She knew her limitation and could express what she needed.
I was happy for the girl and her mom, and at the same time I couldn’t stop thinking about the kids like my son, Anand, who can’t have those types of conversations. And I thought about the families like mine who care for them. Walking into a café would be such a huge struggle for many of us — the anxiety around crowds and the fear of a meltdown for unknown reasons prevents us from even thinking about going out for breakfast.
We all want the world for our children, but sometimes just surviving becomes our day-to-day life.
But yet, I marvel at human nature.
When my son was born, I experienced immediate joy and sometime later came anger, frustration, sadness and denial. For many parents of children with autism or other special needs, parenting is challenging right from the start. For others, they face challenges more gradually. …
As soon as Madhu and Sugastha’s daughter, Vasudha, was born, a nurse performed a routine blood prick to check the baby’s glucose levels. Since Sugastha had developed gestational diabetes during her pregnancy, the test was making sure that her newborn daughter’s blood sugar was within a healthy range.
“But then, that little spot on her toe didn’t stop bleeding for more than a day,” Madhu recalls. “The nurses chalked it up to the fact that she was a little baby, kicking her feet around, and that’s why the bleeding wouldn’t let up.”
It was just the beginning of mysterious bleeding events though. Over the first year of Vasudha’s life, her parents noticed strange instances of prolonged bleeding that resulted from small scrapes. When she was 8 months old, they grew concerned when bruises began appearing all over Vasudha’s body for seemingly no reason. Their elder son, Saketh, had never experienced any of this when he was a baby.
“We went to our pediatrician and he told us about the possibility of von Willebrand disease,” Madhu says. “Up until this point, I had heard about hemophilia but didn’t have any other knowledge about bleeding disorders.”
Von Willebrand disease is the most common inherited bleeding disorder — as many as 1 in 1000 babies are born with it — and it affects the body’s blood clotting process. There are several types of the disease; they are known as Types 1 through 3, with Type 3 being the rarest and most severe form of the condition.
“Our pediatrician ordered a blood panel test for Vasudha,” Madhu says. “He called us with the results and said that it was the worst-case scenario, Type 3 von Willebrand disease.” …
“I want the best quality of life for my son — what any parent would want for their child,” says Michelle, mom to 12-year old Caden.
Caden has spent almost half his life struggling to keep up with his peers after a lawnmower accident badly injured his leg at the age of six. The injury disrupted his growth plate, and was having a significant effect on his growing limb, leading him to have knock-kneed alignment in his right leg. The condition was keeping him from fully experiencing the activities a boy his age normally enjoys; from playing baseball and basketball to walking the amusement park with his family.
A growth plate is the area of growing tissue at each end of the long bones in children (such as the femur, tibia and humerus). These plates are where the bone gets longer as one grows.
“It bothered his dad and I, to see him unable to keep up — and it really bothered him,” Michelle, recalls. “One day, Caden came to me and said, ‘Mom, can you help me?’ and I told him, ‘I will do everything in my power to help you.’”
That’s when Michelle began doing research, spending over a month trying to find the best orthopedic surgeon in the country to help correct Caden’s growing leg. …