Two days later, on Sunday morning, January 16th, her parents were told Maddie was going to die.
They had noticed that Maddie was more tired than usual since returning to school after the holiday break, and her balance appeared a little off. But, in general, Maddie remained the happy, spirited, funny, and bright little girl she had always been.
Saturday, January 15th, her mom took her out, and noticed something wasn’t right. She just felt it. She took her into Kids Doc, a weekend urgent care clinic, and with the go ahead from their pediatrician, they were sent to the emergency room at the Children’s Hospital of Orange County (CHOC). She called Collie, Maddie’s father, and he met her at the hospital immediately. Maddie had a CT scan that night.
Maddie was diagnosed with a malignant, inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma, or DIPG. Located on the brain stem where the spinal cord meets the brain, it is the most feared pediatric brain tumor. There is no cure, and, after nearly a century of study, modern medicine has only been able to stretch life expectancy after diagnosis a matter of weeks. Their incredible medical team prepared her parents for the rapid progression of the disease, with deterioration in her ability to walk appearing within weeks followed by a steady loss of motor control throughout the body. Their only solace was that it was a disease that did not typically cause significant pain.
But nothing could change the fact that the survival rate was 0%.
A mere 8 weeks later, on March 13th at 9pm, Maddie gently passed away, with her parents at her side, with no pain and no fear. Her father Collie posted the following on their Caringbridge website:
“Dear Family and Friends,
It is with great sadness that Kajsa and I have to inform you that our dear, sweet Maddie has passed away and is now an angel in Heaven. She died at 9 pm on Sunday evening, March 13, 2011. Kajsa sang her the night night songs she has sung to her since birth and kissed her on the cheek, and Maddie took her last breath. We were right beside her.
While we hoped we would have more time with her, we are grateful that she died peacefully in her sleep at home. She experienced no pain and no fear. For that, we are eternally grateful. We will miss her with all our heart and soul, but feel so privileged to have had the incredible honor of being this amazing girl’s parents. She was the most beautiful, funny, intelligent and warm-hearted person we have ever known. “
While still in the hospital, Maddie’s parents came to the conclusion that there were two things they could control; making sure the precious time they had left with Maddie was lived to the fullest and making sure that they did something to properly honor her. To somehow make something positive out of this.
Maddie had a passionate love of the ocean. One of Maddie’s favorite places in this world is the Ocean Institute in Dana Point. This past summer, she attended their Sea Camp, and it was the best week ever. She would get a name tag every morning at check-in, and to this day, every single name tag she received is stuck to her bedroom wall.
At her memorial this weekend, Maddie’s ashes will be spread at sea. Her soul will be at peace, surrounded by all the animals and natural beauty she so loves.
Maddie’s parents, Collie and Kajsa, are passionate about memorializing their daughter in a way that is worthy of their very special little girl. A place where they, and everyone who loves her, can go and remember her. A place where other children and their families can visit and make memories and learn about the ocean and its preservation.
The Ocean Institute is in the final phase of a $4M Capital Campaign to create exciting new ocean-side programs and facilities that will complement their Ocean Education Center. To be built right “on the water”, the planned Seaside Learning Center will introduce thousands of K-12 students and public visitors to current and emerging issues in oceanography, environmental science and maritime history.
A series of learning stations have been carefully designed for the Seaside Learning Center to provide immersion-style education. For example:
- The Ocean Science Dock will offer a number of science-related learning stations including a biodiversity lab containing aquariums brimming with sea life, and Oceanographic Technology Lab with an underwater Remote Operated Vehicle (ROV), and a white sea bass grow-out pen. It will provide ample mooring for two of their education vessels, R/V Sea Explorer and Spirit of Dana Point, with additional space for visiting ships.
- The Maritime History Pier will highlight the progression of scientific thinking about our ocean environment from the early 1600’s to today. Learning stations will give students an opportunity to experience scientific discovery as they experiment with historically-authentic equipment. Activities will include hoisting long boasts with davits, using a boom crane, working a capstan, and raising sail with a block and tackle system.
The Seaside Learning Center project is shovel-ready and all permits are in place. All that is missing are the necessary funds. Depending upon success with fundraising, building is planned for summer/fall 2011.
The Maddie James Seaside Learning Center would be possible with a donation of $1,000,000. They realize this is a huge number and have no idea if they can get anywhere near it. But in three weeks, they have raised over $200K, so I believe in my heart that they can. There are other naming opportunities in a lower donation range, but they have decided to reach for the stars (or maybe sea stars in this case) and try and raise as much money as possible. They will do whatever they can with the funds raised to make sure Maddie’s name lives on in perpetuity at The Center.
They need your help.
Please donate $1, $10, $100, $1000, to help memorialize this precious child.
- Maddie’s parents have started an amazing foundation to honor Maddie and her immense love of the ocean. You can learn all about The Maddie James Foundation here, as well as Collie and Kajsa’s hopes of creating The Maddie James Seaside Learning Center here. If you feel so inclined, please help them reach their goal by making a tax deductible donation here.
- Visit Maddie’s CaringBridge page. Read about the special moments she has experienced.
- Send Maddie and her family all of the prayers and positive thoughts you can muster. They need them more than you will ever know.