1There With Care News • Summer 2016 • bayarea.therewithcare.org

news Issue #3 • Summer 2016

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Fernanda Awaits a Critical TransplantBy Robin Hindery Enan

In late March, Fernanda marked off two milestones. The first was a happy one, as the outgoing teen who loves music,

drawing and experimenting with make-up celebrated her 14th birthday. The second was more sobering, as she passed the one-year anniversary since joining the waitlist for a double lung transplant.

Fernanda suffers from cystic fibrosis, a chronic, life-threatening disorder that damages the lungs and digestive system. The condition was diagnosed when she was just 14 months old, and since that time her life has been filled with hospital visits, medications and other challenges that have placed tremendous strain on both her and her family.

Last spring, when it became clear her lungs were giving out, her mother Mayra moved with her from their home in San Diego to Mountain View so that she could join the transplant list at Lucile Packard Children’s Hospital. Fernanda’s 10-year-old sister and 6-year-old brother followed in September,

while their dad continues to work in San Diego in order to maintain their health insurance.

“She does four breathing treatments per day, and each one takes an hour and a half,” Mayra explains of her daughter’s taxing daily regimen. “She takes over 20 medications in the morning and at night, and every time she eats she has to take enzymes for her pancreas. She also wears oxygen 24/7, as well as a mask whenever she’s outside in public.”

Keeping track of Fernanda’s medical care is a full-time job for mom, who tries to balance Fernanda’s care with that of her other two children. In addition, mom helps Fernanda, who is home-schooled due to her compromised immune system, from falling too far behind on her studies. Having support to help her with all that is going on is part of the reason Mayra describes There With Care as a huge blessing in the family’s life here.

Mayra heard about There With Care through a hospital social worker a few weeks after moving to the area. Since then, the family has been receiving support, delivered by their volunteer Christy that includes grocery deliveries, clothing for their family, cleaning supplies to help keep her safe due to low immune system, books, and gift cards to purchase daily necessities. Christy regularly drops off supplies at the family’s one-bedroom apartment, and she has become a caring advocate for the family. “We

Fernanda Coronado

“There With Care has been such a big help. It’s a really nice program, and it helps keep our spirits up.”

5There With Care News • Summer 2016 • bayarea.therewithcare.org

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being there for cameronBy Robin Hindery Enan

When you’re living out of a suitcase in a hospital more than 100 miles from home, and watching your 6-month-old baby fight for his life, you learn that relentless optimism is a crucial coping skill.

For Nicola Harris, that almost unimaginable scenario is a daily reality. While the family lives in Sacramento, she has spent most of the past year at Lucile Packard Children’s Hospital with her child, Cameron, who suffers from hypo plastic left heart syndrome — a heart whose left side is critically underdeveloped.

The Harris’ were first connected to There With Care soon after Cameron’s July 2015 birth, referred by their hospital social worker. At two days old, Cameron

underwent his first emergency heart surgery. Finally released two months later, he spent less than three weeks at home before the complications of his condition brought him and his mom back to the hospital.

Nicola calls There With Care’s regular deliveries of groceries and diapers “a great blessing,” and says that the gas cards “make our weekend family visits possible.”

Earlier this year, Cameron underwent his second major surgery. In addition to an eventual heart and lung transplant, he has at least one more surgery on the horizon by the time he turns three years old. “He’s a fighter,” says his mom. “He teaches me what strength really is, what patience means.”

Despite the stress and uncertainties she faces, Nicola explains, “There With Care makes it possible for us to be here and be comfortable. Overall, the experience has been amazing, so loving. When I deal with There With Care, it really feels like my son is the only one they’re dealing with. That makes you feel so special as a parent. I can focus on being here for Cameron.”

have created a really good bond,” Mayra says of Christy. “Every time the kids know she’s going to come, they get excited.” The holidays were particularly special, she recalls, thanks to holiday gifts delivered for the children and the gift of a Thanksgiving dinner. Most recently, Mayra and Christy worked together gathering personalized cards to present to Fernanda on her birthday. “This is the second birthday she’ll be spending here,” Mayra said, “and it’s hard for her because she doesn’t go out, doesn’t go to school. She can’t even participate in the programs at the hospital because of her immune system. She’s really positive, but she gets frustrated and mad sometimes and she really misses everyone back in San Diego.”

Equally frustrating is not knowing when her transplant will come through. In early March, the family received news that an organ

was available and that Fernanda was a match and was second in line to receive it. In the end, the first person on the list ended up being a match as well, and the waiting began again. Mayra shared, “I spend a lot of my time taking Fernanda to appointments and going to the pharmacy, and when my other kids get home from school, I’m taking care of them and Fernanda starts her home-schooling,” she explained. So it’s like the whole day is planned. I have no time to go to the store to get the things I need.”

“In San Diego, we had relatives and friends close by, but we never had any help like this,” she continues. “We have no one over here, but There With Care has been such a big help.” Fernanada and Her Family

Adorable Cameron

Beautiful Fernanda