Maddie: A Story of Courage and Heart

Maddie James

I clearly remember when I found out my good friend Kajsa was pregnant. A small group of us were gathered at her house in Laguna Beach, planning on having a few drinks before heading out for the night. Kajsa was drinking her beer out of a glass and I thought to myself, “That’s fancy; she usually drinks her Bud Light out of the bottle.” But after the rest of us had our drinks in hand she made the announcement—Kajsa was pregnant. (She was drinking a non-alcoholic beer out of that glass and didn’t want us to know, the tricky girl.) After months and months of fertility treatments, to say that we were ecstatic is putting it mildly. Especially since her pregnancy happened naturally. A short while later, three more of us became pregnant, and BAM! we had a playgroup.

The first year of our kiddos lives, Kajsa, Alison, April and I met at least once a week. I don’t know how I could have made it through those first months of motherhood without them. Our children, Maddie, Luke, Finley and Kieran became best buddies. We would rarely do an outing without at least another of us joining. As the kids grew, schedules became busier, and though we didn’t have the time to meet once a week, we did make a point to get together somewhat regularly and have the kids play while we chatted, vented, laughed and cried. You know, regular motherhood stuff.

When they were babies. Clockwise from front: Kieran, Luke, Maddie and Finley

At two years old. From left: Finley, Maddie, Luke and Kieran.

This past Friday, January 14 was such a time. My son, Kieran, hadn’t seen Maddie in six weeks, and I hadn’t seen Kajsa in a month, so we wanted to have them over. They came to our house for dinner—the kids played with Play Dough, looked at what Kieran had received for Christmas, and then Maddie commented that she was tired and wanted to know if she could watch television and rest. Not something a five-year-old usually says. Kajsa commented that Maddie had been extremely tired during the previous days—falling asleep in unusual places and going to bed at 6:30 PM. She chalked it up to having a big week at school, but had taken her in for blood tests a couple days prior to make sure. Nothing unusual showed up.

Maddie and Kajsa

While they were over, Kajsa noticed that Maddie was walking a bit “off-balance.” Because Maddie wears glasses, Kajsa would ask her, “Can you see okay?” And Maddie would reply yes, and be on her way to play with Kieran. My husband noticed Maddie seemed to have a limp and asked me about it after they left—I said that Kajsa hadn’t mentioned Maddie getting hurt. We put it out of our minds, only thinking it was a fun start to an extended weekend.

So you can imagine my shock when I woke up Sunday morning, January 16 to read the following email:

“Maddie is in the ICU at CHOC in Orange. I had noticed her becoming increasingly off balance and having trouble walking straight the last few days, and today her speech became slurred.  I took her to urgent care and then she was admitted here.

A cat scan has detected a sizable mass on her brain. That is all that we know right now, and an MRI / meeting with a neurosurgeon in the morning will give us a much better idea of what we are dealing with. She is resting comfortably and isn’t in any pain.”

Having once been in Kajsa’s shoes, I sympathized and tried not to panic. My first thoughts were, “This doesn’t necessarily have to be cancer. We’ll help her get through this. We’ll think positively. We’ll be playing together soon.”

A second email followed some hours later. A portion of it read:

“There is no easy way to say this and I can’t believe I am writing these words, but our sweet Maddie has been diagnosed with an inoperable, malignant brain tumor called DIPG [Diffuse Intrinsic Pontine Glioma]. Our doctor has prepared us for the incurable and aggressive nature of the disease. We are talking months, with a rapid decrease in motor skills, ability to walk, etc within weeks.”

After reading this, I became numb. The tears, which had been flowing all morning, were now going nonstop. I felt as though I had been punched in the stomach. Now, I no longer knew what Kajsa was going through and I didn’t know what I could do, though all I wanted to do was take away her pain.

Maddie was given six months to live.

Maddie and Collie

Today, five weeks later, the “aggressive nature of the disease” is shockingly evident. Maddie’s parents, are spending every moment with their daughter and making all the memories they can, which has included a trip to Hawaii to snorkel, backstage tours at Long Beach, CA’s Aquarium of the Pacific, Sea World, and the Ocean Institute in Dana Point, CA—all having to do with what Maddie loves—the ocean and sea life.

As for me, I’m still at a loss of how I can help. I can’t take away the pain, I can’t make it better and I can’t go back to January 14. But what I can do is get the word out about the Maddie James Foundation. Maddie’s parents, Kajsa and Collie, have established a foundation in which money raised will go to the Ocean Institute, a place that Maddie loves with all of her heart. The foundation’s website says it best:

“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.

When the time comes, 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.

Kajsa and Maddie exploring the tidepools.

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.

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. We realize this is a huge number and have no idea if we can get anywhere near it.  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.”

To make this happen, we need your help. Whether its one dollar or hundreds of dollars, every single bit will help in having Maddie’s name live on. Please help by clicking and donating here.

Please help Kajsa and Collie make sure that Maddie's name lives on.

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  1. Such a beautiful little girl!! My prayers are with her family. Thank you for sharing her story and letting us know about her foundation. I hope the $1M goal is met and that here name will live on forever at a place she loved. Going to make my donation right now.

  2. I can’t help but be in tears as I read this. My thoughts and prayers are with beautiful Maddie and her family and we will be making a donation to her foundation.

  3. You have a gift with words. This story was clearly written straight from the heart. Perfectly stated my friend!

  4. I’m in tears reading this, and my heart goes out to Maddie and her family in every way possible (including a donation of course). This is every parent’s biggest nightmare, and I simply can’t imagine… but thank you for sharing their story, and please know that many strong, heartfelt thoughts are coming their way.

  5. Breezymamajill says:

    Thank you Alex for writing such a beautiful piece on our dear sweet Maddie. Kajsa is very lucky to have you as a friend. Thank you also for getting the word out about the foundation through Breezymama.

  6. This is a beautiful story Alex! The pictures are so precious!
    Love and strength to Kasja and Collie.. xx xx

  7. Holding back the tears at work while I read this; I could not imagine what Maddie’s parents must be feeling. Thank you for sharing her story, and for the opportunity to learn how to help make her name live on.

  8. Alex – this piece has totally moved me. From the minute I saw the post on Facebook about the photo contest, I have had Maddie on my mind. She’s the exact same age as my Maddie and I don’t know how any parent can prepare for this. I just wish her as much peace and happiness as she can have until she is among angels and swimming in the sea forever. My heart goes out to her family and friends. I will pray for their strength as they navigate through this difficult time.

  9. my thoughts and prayers to maddie and her family. i can’t imagine what they are going through. alex…beautifully written.

  10. Gaelle Gralnek says:

    Beautifully written, Alex — the James family is lucky to have friends like you, who can inspire strangers like me to be a part of Maddie’s Foundation.

  11. Thank you for putting into words what I have been feeling inside ever since we heard about Maddie’s diagnosis. My son Julian and I have had the privilege of spending time at Disneyland and a playdate with Maddie, and to say I have been devastated by the news is an understatement. As a mother I can only imagine the heartbreak that this has brought to Kajsa and Collie. It’s simply unbelievable. I am now following your blog and will retweet this post for Maddie. She holds a special place in my heart because she was the first child ever to call me “Julian’s mom”. A special moniker indeed!
    I don’t know you, Alex, but I know your husband from high school. I am praying and sending good thoughts to you for strength as you have to explain to your son why this is all happening. Maddie has had such an impact on everyone who has come in contact with her. We will make The Maddie James Seaside Learning Center happen so she can live on forever!

  12. I don’t really know what to say. I am so saddened and stunned. I remember playing with Maddie too when we did stroller strides. I remember her very sweet, gentle spirit. I wish strength for her, Kajsa and Collie and everyone else who is suffering. The Maddie James Foundation is a beautiful way to carry on her spirit. Thank you for sharing her story.

  13. Maddie is my inspiration. It’s a amazing that a little girl I’ve never met can mean so much to me. Her story will stay with me forever. I will continue to pray for Maddie and her family. Thank you Alex for sharing her story.

  14. If possible please keep us posted about Maddie.

  15. Thank you for sharing this and letting us know about the foundation. My heart breaks for the James family. T&P!

  16. Thank you, Alex, not only for your exceptional writing but also your generous heart.
    With appreciation,
    Maddie’s Aunt Mare

  17. This story made me cry. I will never forget Maddie. Never met her but I can say that after reading this I have come to love this precious angel. Maddie and her family are in my prayers.

  18. Yoli Anderson says:

    My husband and I will be lifting Maddie up in Home Fellowship this week. We will be praying for miraculous healing, and God’s comfort and peace upon her family and friends.

  19. amanda cushman knobel says:

    What a beautiful way to celebrate such a beautiful and precious life – our support and prayers are with you all and fully expect to see your dreams for the foundation to be realized.


  1. […] past eight months have been somewhat of a blur for Kajsa James, mother of Maddie, who was diagnosed with an inoperable brain tumor in January and passed away eight weeks later in […]

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