I wish to have a camper trailer
Mila
5
kidney transplant
A safe little heaven on wheels
Mila's wish was made possible thanks to a generous bequest from the estate of Richard “Dickie Lau” Fults.
Shannon’s pregnancy with Mila was “textbook.”
She had no indication anything was wrong until the day of delivery when a mass that had gone undetected on sonograms was discovered on Mila’s kidney.
Mila spent the first 31 days of her life under the careful watch of doctors and nurses at the neonatal intensive care unit. Even when she was well enough to go home, doctors let the family know that she’d eventually need a kidney transplant.
The next four years were up and down for the family. “Mila has been in the hospital multiple times,” says Shannon. “She has had multiple surgeries, and she has had many eventful medical circumstances.”
Matches for kidney donations can be incredibly difficult to find and Mila’s blood type—O positive—is the rarest type.
None of Mila’s family members were a match, but her dad, Nick, qualified as a donor through a kidney paired donation. This is a process that uses an algorithm to match pairs from across the United States and create chains for kidney donations.
Mila with her dad Nick, who donated one of his kidneys in a matched pair donation.
The family prepared for a long and uncertain wait. “They said it can happen within days, or it can be a year,” explains Shannon. But news came quickly—they listed Mila in October, and learned in December that the algorithm had found a match.
She had matched with a rare two pair chain. She would receive a kidney from a donor in Colorado, and in turn, Nick would donate one of his kidneys to a man in Virginia.
Even more incredibly, the family learned that Mila’s donor was giving altruistically. Out of the kindness of her heart, she had pledged to help others. Just the year prior, she had donated a portion of her liver to a save a baby’s life.
In December 2019, Mila’s family began to isolate themselves in anticipation of their upcoming surgeries. On January 7, Nick and Mila underwent their operations concurrently, at separate hospitals in the Bay Area.
Unfortunately, Mila’s recovery was quite tumultuous, and she required five surgeries post-transplant. The rest of the world was also experiencing turbulence as news about the COVID-19 pandemic emerged.
“We’ve been in lockdown ever since,” says Shannon. “That means no grocery stores, that means no friends. We see my mom, my dad, and Nick's parents, and those are the only people we see.”
New restrictions limited the number of visitors to the hospital, so Shannon had to handle much of Mila’s care all on her own during the slow recovery. It was a tough period of feeling alone during an already isolating time. “We just made the best of it,” says Shannon. “We logged over seventy inpatient days, not including the six weeks that we moved to San Francisco.”
Thankfully, now that she is no longer in a fog from the pain and stresses associated with her condition, Mila has come alive. “Since she’s been transplanted, and finally gotten to the other side of this, we’ve have gotten to know our daughter,” says Shannon. “Her developmental skills started improving exponentially—her language took off, her motor skills took off, her personality took off. It has been so fun to see.”
Along with these new developments has come a new fun and spirited personality. “She's just now getting into that five-year-old sassy phase,” says Shannon. “She has learned the power of ‘no.’”
Even before the COVID-19 pandemic brought global travel to a halt, the family’s medical team let them know that their plane-traveling days were over. Kidney transplant patients like Mila are incredibly fragile—a routine cold or a light fever means a trip to the hospital because it could signal rejection or infection. “If you have a runny nose, you go to the hospital immediately,” explains Shannon, “which we have done multiple times.”
This was tough news to come to terms with. “We’re a big travel family,” explains Shannon. “In the first year of Mila’s life, she was on eleven flights. We had weddings to go to, and friends to see across the country.”
The entire family has always loved camping and boating. Shannon grew up going to the lake constantly and was waterskiing by age five. Mila was outdoorsy from a young age as well.
“During the summer she loves the water,” Shannon explains. “We're often on her papa's boat jumping and swimming. But when she did get so sick, we weren't able to do that anymore, which I think she really missed.”
When volunteers from Make-A-Wish visited and asked Mila and her family to dream big, they saw an opportunity to travel together once again, safely. “We like to get up and go, and we'd like to take her to see places,” explains Shannon. “We didn't want that to stop because of her condition.”
But tent camping is not an option for Mila. “She's on all kinds of medications and we need refrigeration for her medication.” That’s how they landed on the idea of a camper trailer—a “Barbie camper” or “car house,” as Mila likes to call it.
Mila has been isolated for much of her life, which has been incredibly hard. “She has very few special days in her life,” explains Shannon. “She has no interactions with any peers except for her brother, and she’s not allowed to have playdates.”
So when Shannon and Nick learned that Mila’s wish to have a camper trailer would be coming true, they went all out to make her day extra special. The fun started the week before her wish reveal—every night at bedtime, Mila and her little brother Max received clues about what her wish would be.
Then, on the wish day, they set up balloon arches and ordered Mila’s favorite food of all time—pizza. Prior to her kidney transplant, Mila couldn’t eat pizza due to the potassium, so the cheesy dish holds a special place in her heart.
They wanted the day to be full of fun and surprises for her. “She doesn't understand yet that not all kids are poked and prodded all the time,” says Shannon. “We tried to make it very special—she has been so brave for so long—and brave girls are rewarded with really cool presents.”
Mila was surprised with some special camping gear—rain boots, camping books, a flashlight, and a cozy pink blanket—and then came the big reveal of her “car house.” From the moment she saw her camper, Mila was completely mesmerized. “When she came out, she was so stunned,” says Shannon. “And her little blue eyes! She's got the brightest blue eyes, they twinkled brighter than you've ever seen.”
Shannon says that to see Mila’s eyes light up like that that was transformative. “When you see your child, who has been so dull for so long, seeing that sparkle,” she explains, “it brings the whole family back to life.”
The new camper has air conditioning and refrigeration for Mila’s medications, and will allow the entire family to travel safely without risking exposure to COVID-19 and other harmful viruses. It’s an immense huge relief for a family that has been isolated for so long. “It is our safe little heaven on wheels that we can now explore and get her outdoors again with,” explains Shannon.
“Her life has been doctors’ appointments and adults, so for her to have this exceptional gift that will continue giving, it was so life-changing for her,” says Shannon. “It will open doors and windows and opportunities that she would never have had.”
Today, the family feels excited and hopeful when looking forward to fun travel adventures with their new camper. Mila and her little brother Max have already been having lots of fun playing in the camper and they cannot wait for their first excursion. “She wants to go to the beach,” says Shannon. “So that'll be the maiden voyage, to get some ocean air and salt and sand between her toes.”
When Mila is out in nature with her family, she will be able to remember her wish day. “She knows it's her wish present, and she knows that Make-A-Wish gave that to her,” says Shannon. “We just really try and explain the importance of how kind someone was to her because she had so many dark days.”
Mila continues to grow and develop exponentially. Recently, she was admitted back to the hospital for a routine biopsy, which revealed amazing news—a nearly perfect kidney. The family even stays in touch with Mila’s selfless donor, exchanging photos and letters back and forth.
The family says they’ll walk away from this experience forever changed, in awe of the kindness of strangers. “Make-A-Wish bonded our family closer than we would have had an opportunity to do without,” Shannon says. “We know the power of a wish.”
Shannon and Nick have already decided that, as soon as their lives calm down a bit, they will do whatever they can to give back to the organization that brought their family so much hope. And in the meantime, they have plenty of adventures in their little heaven on wheels to look forward to.