Health

Parenting a chronically ill child

Updated 9:12 AM ET, Wed December 7, 2016
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Daniel Iniguez uses a nebulizer every morning to inhale medicine in his home in Ontario, California. Deanne Fitzmaurice
Daniel's father, Manuel, gives his medicine. Daniel's neurofibromatosis has caused tumors to develop in his brain, stomach and spine. They may become malignant at any time, so Manuel and his wife, Dana, check Daniel's body every night for spots or bumps on his skin. Deanne Fitzmaurice
At 6:30 a.m., the bus arrives to take Daniel to school. Deanne Fitzmaurice
Savitri Baker has cerebral palsy, developmental delays, seizures and spastic quadriplegia. She was born weighing 1½ pounds. Now more than 100 pounds, she has a lift system in her bedroom to help her mother, Beverly Baker-Ajene, move her between her bed and her wheelchair. Deanne Fitzmaurice
In February, the Baker family moved from Oakland, population 400,000, to Dunlap, California, population 131, in the Fresno foothills. The nearest school with a special needs program is too far away, so Baker-Ajene plans to home-school Savitri. Deanne Fitzmaurice
"Shoot it!" Savitri yells while watching a Warriors basketball game. Having spent much of their lives in Oakland, the Bakers are big Warriors fans. Deanne Fitzmaurice
Evan Gates has neurofibromatosis as well as physical and speech delays. Evan is 4 years old, but his mother, Jazmin, says he behaves like a 2-year-old and talks like an 18-month-old. Deanne Fitzmaurice
The Gates family cheers on Evan, who has just drawn his first happy face. Deanne Fitzmaurice
The Gates family lives on Beale Air Force Base in central California. When Evan's older sister was 3 months old, his father, James, deployed overseas for a year. He could be deployed again any time. Deanne Fitzmaurice
Samantha Jones and her family live in Grass Valley, California. Both of her sons have type 1 diabetes. On this morning, Samantha changes the insulin pump for her younger son, Emmett. Every night, Samantha sleeps with the boys' continuous glucose monitor receivers to monitor their blood sugar levels. Most nights for the past 10 years, she has gotten up three for four times to give them insulin or juice. "Get up and do it all over again. Every single day," she says. Deanne Fitzmaurice
Samantha marks the carbohydrate count on Emmett's and Cohen's lunches. Throughout the day, the boys get insulin from their pumps and eat snacks so their sugar levels don't fall dangerously low. On some days, they need additional insulin injected by a syringe because their sugar levels aren't coming down. Deanne Fitzmaurice
Cohen and Emmett wrestle with each other at home. Older brother Cohen, 10, is capable of monitoring his own glucose levels and counting his own carbohydrates, but he sometimes forgets. Both boys have emergency diabetes kits in their classrooms at school. Deanne Fitzmaurice
Derek Longwell, 20, has spina bifida, hydrocephalus, a neurogenic bowel and bladder, and bi-lateral clubbed feet. He and his family live in on a farm in Shingletown, California, with nearly 100 farm animals and pets. Derek has had 42 surgeries in his life. Deanne Fitzmaurice
Derek will turn 21 this year. His mother, Wendy, has spent months transitioning him out of his entire network of pediatric care to adult care. She has also become his legal conservator so that she can continue to authorize his medical care. "As a mom, you're always thinking, what if something happens to me?" she says. Deanne Fitzmaurice
Twins Celeste and Alexia Madrigal were each born without one kidney, and each had open-heart surgery. They have 22q deletion syndrome, which, among many things, affects their teeth. Only 4 years old, Celeste has already had a full dental restoration. Parents Americo and Criss must brush the girls' teeth after every meal. Deanne Fitzmaurice
The twins' grandfather, Daniel, plays a critical role in the girls' care. Daniel comes to the Madrigal house in Marysville, California, every morning between 5 and 6 a.m. to get his grandchildren ready for school, drop them off at school, and take the twins to their appointments. "Grandpa has been an angel sent from heaven to help us with the twins," says their mom, Criss. Deanne Fitzmaurice
Dorilyn Chimienti gave birth to triplets at 23 weeks; most pregnancies last 40 weeks. Kathryn was the only child who survived, but her brain had not fully developed. Now 4 years old, she lives with hydrocephalus, cerebral palsy, periventricular leukomalasia, agenisis of the corpus callosum and cortical visual impairment. Deanne Fitzmaurice
Kathryn has vision, speech and occupational therapy. This past spring, she and her mother traveled from their home in Fresno, California, to Pittsburgh to see an ocular specialist. It took Dorilyn six months to get the appointment. Deanne Fitzmaurice
Isabella Villafana, who has Down syndrome and a heart defect, has also experienced developmental delays. Her mother April says it's difficult to communicate with her. Deanne Fitzmaurice
Isabella rides her favorite horse, Mary, at Reins Therapeutic Horsemanship Program in Fallbrook, California. Horse therapy has helped Isabella strengthen her muscles. Deanne Fitzmaurice
Aashni Pletcher has an autosomal recessive genetic disorder which has caused her mitochondrial disease. Mitochondrial disorders affect every organ in the body. For Aashni, it has affected her in many ways, including very low energy, low muscle tone throughout, liver and eye issues, and an inability to eat by mouth. She gets all her nutrition through a gastronomy tube (G-tube) directly into her stomach. Her feedings take two to three hours each. Deanne Fitzmaurice
"Every night, Jake and I make a list of what we're going to tackle tomorrow," says Aashni's mom Aditi, referring to her husband. The Redwood City, California, couple says they spend 10 hours per week figuring out insurance and scheduling appointments. Both Aditi and Jake are doctors, but Aditi says she'd rather be Aashni's mom, and not her doctor, too. Deanne Fitzmaurice
Edward Hu plays in his family's Alameda County, California, home. He and his older brother, Stephen, are two of the 200 to 300 children, virtually all boys, with Hunter syndrome in the United States. Hunter boys are missing one key metabolic enzyme, which affects every organ in their bodies, and causes gradual deterioration of their brain. Their mother, Pei, says their predicted lifespan is 10 to 20 years. Deanne Fitzmaurice
With the help of her clinical assistant, Pei feeds the boys and keeps them entertained during their weekly three-hour enzyme replacement treatment. She dreams of being able to administer this treatment in her own home, to avoid the difficult trips to the hospital. Deanne Fitzmaurice
Pei kisses her son, Edward. "Maybe it's the impact you make that is ultimately the meaning of life," says Pei, who has become an advocate for her sons and other special needs children. "If you think of it that way, it doesn't matter if your life is short or long. My boys have already made an impact." Deanne Fitzmaurice