DANA POINT – Maddie James loves to draw – usually something with fish, dolphins, sea lions and beach scenes. So now, as the Capistrano Beach 5-year-old nears the end of her young life, her family wants to give her a lasting legacy – a place where other children can learn to love the ocean as she does.
Maddie has an inoperable brain tumor that has left her with weeks, maybe days, to live. Her mother, Kajsa James, 38, says that though it’s been a challenge to explain Maddie’s condition to her, they have plenty of happy memories to reflect on, especially last year’s Ocean Institute summer camp for kids.
It’s why the James family has started the Maddie James Foundation (maddiejamesfoundation.org) with the goal of raising the remaining $1.3 million needed for the institute’s $4 million Seaside Learning Center, which the family hopes will carry Maddie’s name. The project is expected to break ground this summer or fall at Dana Point Harbor, according to Dan Stetson, Ocean Institute president and chief executive.
According to the foundation website, a donation of $1 million would be necessary to have the project named the Maddie James Seaside Learning Center.
“We realize this is a huge number and have no idea if we can get anywhere near it,” the family says on the website. “There are other naming opportunities in a lower donation range, but we have decided to reach for the stars (or maybe sea stars in this case) and try and raise as much money as possible. We will do whatever we can with the funds raised to make sure Maddie’s name lives on in perpetuity at the center.”
Stetson said in a statement that the institute has been “deeply touched and inspired by the courage of this very special little girl. We would be honored to have our Seaside Learning Center commemorate Maddie’s life by creating a place where everyone who loves Maddie can go and remember her, as well as a place where other children and their families can visit, share memories and learn about the ocean and its preservation.”
Maddie can no longer attend her kindergarten class at St. Anne School in Laguna Niguel, so her classmates plan to march with a banner in support of her foundation in the opening parade for Dana Point’s 40th Festival of Whales on Saturday.
All of this has happened quickly. Kajsa James said she noticed on a Friday afternoon in mid-January that her daughter was not her usual self. By Sunday morning, she and her husband, Collie James, 40, got news no parent wants to hear.
Maddie has deep infiltrating pontine glioma, or DIPG, a cancerous growth that affects about 200 American children each year and offers no chance for survival.
Now, Kajsa and Collie, after being separated for a year and a half, have come together to live in the same house and work side by side in the care of their daughter.
“They showed us the X-rays and the results of a CT scan and an MRI, and so I just asked the doctor point blank, ‘Is our daughter going to die?’ and he said, ‘Yes, she is,'” Collie said. “We just needed the truth.”
Dr. Michael Muhonen, Maddie’s attending neurosurgeon at CHOC Children’s hospital in Orange, suggested they get in touch immediately with the Make-a-Wish Foundation and go away somewhere to create some positive memories with their daughter. Within days the family was in Maui accompanied by several of Maddie’s friends, playing on the beach and swimming in the ocean, her favorite activity.
Even now, as Maddie’s condition deteriorates and she is able to do less and less, the family still visits a community pool where she can get in the water for a couple of hours each day.
“In the water she is free of her physical limitations and what she is experiencing from the medication … she gets to be herself,” Collie said.
Since Maddie has been unable to go to school, she has been at home under hospice care, with the adults in the house under a “no cry” rule. Her teacher visits with the latest class assignments every few days.
In mid-December, before the news of Maddie’s illness, the family, on a whim, celebrated her 5½-year birthday. Now they’re glad they did, and they’ve decided to celebrate her 5¾ birthday a little early, this Sunday. The family plans a surprise party with her friends at Maddie’s best friend’s house, complete with a big Scooby-Doo cake and a ride in the Mystery Machine, the green van from the Scooby-Doo TV show and movies.
Her mother is trying to fit parts of all the good things an entire lifetime might have had in store for Maddie into her final days.
“Maddie loves to draw, so we drew out what she wants her wedding cake to look like,” Kajsa said. “There’s even a phone app where you can make your own birthday cake. You can blow out your candles, so we started with 6 and then 7, 8 and 9.”
The Jameses say the support from Maddie’s school, relatives and friends has gotten them through it all so far.
“It’s hard not to be overwhelmed, but we have a lot of living to do,” Collie said. “Staying in the day gets me through it. I’ll have a lifetime to deal with this.”
