CFC contributions from federal employees have been a lifeline. Your support means everything! Because of you, Make-A-Wish Greater Bay Area is able to grant the wishes of critically-ill children like 4-year old Amari.
At just two weeks old, Amari began demonstrating exaggerated startle reflexes, would cry frequently, and seemed to be very uncomfortable in general.
“It’s almost like she wasn’t quite there,” recalls her mother, Erin.
The family visited Lucile Packard Children’s Hospital at Stanford for an EEG and an MRI, where they learned that Amari had an incredibly rare genetic disorder called Aicardi Goutieres syndrome. It was terrifying news—the condition can be terminal, and usually results in severe mental and physical handicaps.
But Amari’s parents consider themselves lucky to have even received a diagnosis because the condition is only known to affect about 400 children worldwide. “There are people who just never get a diagnosis or who are misdiagnosed,” Erin says. “Doctors really haven't heard of it.”
The first few years of Amari’s life were tough. She experienced brain inflammation and white matter destruction that worsened her condition and made her feel terrible.
Amari began to lose weight and had difficulty getting enough nutrients, so her parents made the difficult decision to place her on a feeding tube.
Since then, thankfully, Amari’s condition has stabilized. With the support of caring medical professionals, the family has accessed treatments and medications that have mitigated her symptoms and helped her feel more comfortable.
Today, Amari is a sweet, cuddly four-year-old with a “bright little spirit.” She is full of life and spreads joy everywhere she goes. “She certainly isn’t developing like a neurotypical child would, but she’s delighted with the world now,” says Erin, “and the world is delighted by her.”
Finding the perfect wish for a nonverbal child can be difficult, but Amari’s parents knew exactly what would make their little girl light up. “One thing we know is that she loves being outside and she loves being with family,” says Erin. “She loves going on walks and car rides so she can watch the world go by.”
Camping can be a challenge for Amari because she uses a feeding tube and requires climate control. That’s why a camper trailer was the perfect wish for her. “We realized it would be a great amalgamation of all the things that she loves,” explains Erin. “We can all be together, not distracted by work, and just be out in nature.”
The family received a beautiful RV with just the right amenities—a bunk bed with room for Amari and her 7-year-old sister, a dinette kitchen, and a bathroom. “This layout is luxury for us,” says Erin. “It’s just so wonderful and generous.”
The family was grateful that the RV wasn’t too large, so they didn’t end up feeling overwhelmed by it. “We don't have a lot of experience with RVs and so this just seems like such a great way to get outside, but something that's manageable for us. It’s something that we can tow without any problem,” says Erin.
The team at Manteca Trailers not only generously provides RVs at a discount for Make-A-Wish, they also provide guidance on the right fit and everything the family needs to enjoy their new campers. “They dialed us in,” says Erin. “They were just wonderful to work with and they told us everything we'd need to get started.”
Amari and her sister spent the first few nights in the trailer in front of the house because it was so fun and novel. And the whole family went on a camping trip to Lake Tahoe in June.
“It’s just such a beautiful mission,” Erin says of wish granting and the family’s wish experience. “Everything can be a struggle, just the day-to-day things that I think a lot of times we take for granted with neurotypical children. With these kiddos—Amari included—we just don't know how much time they have. So anything that could make their life a little bit brighter beyond the day to day is wonderful and so appreciated.”