When 4-year-old Lilly Phillips hears her mom talk about the recent vacation they went to at Disneyland, she gets excited remembering her favorite ride – Mr. Toad’s Wild Ride.
“That was my favorite, Mom!” she exclaims with certainty, until her older sister, Makayla, reminds her about the Matterhorn Bobsleds ride. Lilly adds quickly, “That was my favorite, too!”
The Phillipses were able to take the vacation in mid-October thanks to Kids Wish Network, a national charitable organization that grants 150-200 wishes annually to children with life-threatening illnesses.
Lilly was born seven weeks premature and had not fully developed an optic nerve and is legally blind. The energetic toddler also suffers from a permanently damaged skull bone flap. Lilly, who has no skull on the right side of her head, had an artificial plate installed in June which means she no longer has to wear a helmet to protect herself from head injuries. But, she still has no appetite and must be fed daily by a feeding tube.
Her medical condition has made the family hesitant to travel too far from Children’s Hospital for their vacations – until recently.
“We’re just getting to where Lilly doesn’t have to see her array of doctors so much,” said her mom, Michelle Phillips.
Kids Wish Network received a wish referral for Lilly in February. After confirming with Lilly’s doctor that she suffers a life-threatening condition, the organization went to work on granting Lilly’s wish.
“She was very talkative,” recalled Meanda DuBay with the Network. “She was able to tell us she wanted to see Disney princesses – and that’s exactly what she told me.”
Lilly soon forgot about the princesses after she got to Disneyland.
“Once she got there, she was all about the rides,” Michelle said.
Along with their time at Disney, DuBay coordinated for the family to spend the day at Newport Beach – playing in the surf and riding rented bikes on the boardwalk.
“She loves to feel the wind on her face and she loves the water, so the beach was a big hit,” Michelle said.
The Phillipses also got treated to a day at the Discovery Science Center and all their dinners were planned – they got to eat at Tony Roma’s, Olive Garden and Ruby Tuesdays.
“This was an opportunity for them to be there as a family,” DuBay said. “The last thing we want is for parents to worry about those details.”
Having their activities and meals planned was a load off Michelle’s mind.
“As a mother it was so wonderful not to worry about anything,” Michelle said. “They had everything planned for us. It was really wonderful to take that time to relax.”
Michelle and her husband, Clayton, have a total of four children – the oldest, Makayla, 15, Emily, 11, Bryce, 8, and Lilly, who just turned 4 on Oct. 17.
Michelle credits the team of doctors at Children’s Hospital (referring to them as “wonderful”) and her other children for Lilly’s progress.
“One of the reasons Lilly has done so well is she has three older siblings that give her constant stimulation,” Michelle said.
Michelle recalls that when Lilly was 10 months old, she was still like a newborn – she could not roll over, sit up or do anything age appropriate.
“She was usually in a state between awake and asleep, and she didn’t respond much,” Michelle said.
Now, Lilly behaves like other 4-year-olds – laughs when her older brother teases her, listens intently when her oldest sister reminds her about the rides they went on at Disneyland and loves to show off her new trampoline she got on her birthday.
Although Lilly has come a long way in such a short time, she has other challenges to overcome. Her family will have to teach her to eat at certain times of the day and how much, since she has no appetite. And when she’s a teenager, Lilly will undergo a rib graft to fill in the hole in her skull.
But for now, the family is content remembering their Disneyland vacation and daydreaming about the next big vacation they’d like to take in three years – Hawaii.
While the Phillipses had a great time in California, there was one thing Lilly really wanted to do but may never get the chance.
“Lilly really wanted to ride a whale in the ocean, but we couldn’t find one,” Michelle said with a laugh.