Kyla's Story
written by mom Juliet

Kyla is our princess sunshine. When Kyla was 21 months old we noticed her eyes crossing every now and then. After 4 trips to the doctor and lots of research we finally let the doctors know that we thought that Kyla had something like a brain tumor (because they were getting nowhere figuring out what was wrong with her).

An MRI confirmed our worse fears. Kyla had a rare, inoperable, incurable, brain tumor called a Pontine Glioma. We held our sweet baby tight and jumped into the world or hospital visits, chemo, and tears. It was the worse time of our lives. Kyla was too young to understand what was going on and we didn't know what was going to happen day to day. It was scary and frustrating. We were living a nightmare.

After 5 horrible months on chemo where Kyla suffered almost every symptom imaginable including losing the ability to walk, Kyla suffered nephro toxicity (her kidneys stopped working properly) and chemo had to be stopped. We researched and found a doctor in Texas who was successfully treating brain tumors without the hard side effects and we headed that way. Kyla was treated for over two years on this treatment and got to walk, dance and run again. She started smiling and laughing and we got our little sunshine back.

For two years we got to enjoy watching Kyla grow and just be a little girl again. In the spring of 1999 we noticed some symptoms returning and some new ones appearing. An MRI again confirmed our worst fears, the tumor had started to grow again. In June 1999 Kyla went into a coma and slipped away from us, leaving us heartbroken and lost. I cannot explain what it is like to live without her, words are just not enough.

Although Kyla's body has died we feel her spirit has lived on. We feel her sometimes and she has made sure to send us signs of brown bunnies, white butterflies and rainbows. We try and remember to celebrate her life and will never let others forget our beautiful Kyla. The best way to carry on Kyla's spirit is to keep talking about her and to treat others kindly in her honor and memory.

Life has been hard since Kyla passed. We still miss her with every waking moment. The grief has gotten gentler over the years but holidays and certain times of the year are really tough. We are so grateful to all the caring people who sent cards and gifts to Kyla during her life, she loved everything so. We would also like to thank everyone who has kept us in their thoughts and prayers since she passed and for sending us cards, you'll never know how much that means to us. Alex, we also want to thank you for all the things you have done for us and your kindness is never going to be forgotten...you truly are an earth angel.

Losing a child is horrible, watching them suffer is worse. Every time someone takes time out of their busy lives to reach out to a family who has a child facing illness or has lost a child, it reminds us all of the immense compassion of the human spirit. Although we may never meet face to face, the love given to our children makes us all connected, and that alone gives us the ability to face another day.

I am so very proud that Kyla was the FIRST child featured on Make A Child Smile. It's an honor that we have always held near to our heart. Alex was just starting up the website when I first read about it and I thought it was the greatest thing! I immediately contacted her and told her I would love to have Kyla be the first child. Kyla received so many wonderful cards and gifts, it really made her day to get mail and for us to know that so many people all over the world were thinking of her!

We have had a baby since Kyla passed away. In December 2001 we welcomed little Jack Kylar F. into our family. Yes, his middle name is after his big sissy Kyla. He looks a lot like Kyla and has really brought some sunshine back into our lives. We keep Kyla in our everyday lives, her pictures are up and we tell Kyla stories all the time.