Welcome

Kaitlyn Laurel Anthony, our beautiful daughter died at the age of 4 years old on September 9, 2008 from complications of Marfan syndrome. To honor her memory, we are now committed to raising funds for the National Marfan Foundation, a group that focuses on research, support and outreach for affected individuals and families. 

Words cannot describe how much we miss Kaitlyn, but we wanted to try to share a little of who she was – both to keep her spirit and memory alive and to help you understand how important this fundraising mission is to us.

On February 22, 2004, Kaitlyn was born a beautiful, happy, and healthy baby girl. Nurses kept telling us she had the longest fingers they’d ever seen; we should give her piano lessons! She spoiled us from the start, sleeping through the night at six weeks old. We always knew she was special; we just didn’t know how special she was.

She was taller and thinner than most kids, but nothing her pediatrician was alarmed over. At two years old, she started nursery school. Her teachers and the other parents quickly recognized her intelligence and maturity. One early memory at school was when all the parents were waiting in the hallway for class to end and Kaitlyn came running over with a hug. All the parents asked their kids, “How was school today?”  While the other kids responded with one-word answers, Kaitlyn provided a five minute monologue on what kids and toys she played with, what she ate for a snack and reported about who didn’t play nicely. Kaitlyn was always full of information, and she was happy to share it.

People used to approach Kaitlyn to tell her how beautiful her hair was. She had a full head of curls, and loved to have it blown out. She enjoyed sitting at the kitchen table and getting her fingers and toenails painted. It became a daily ritual when she started in her second year at nursery school, to kiss mommy so she could get some of her lip gloss on her own lips. She loved wearing jewelry and dress up clothes, but most of all she loved playing with baby dolls and taking care of her baby brother and eventually her baby sister.  

Last winter, when we talked to Kaitlyn about “the new baby” that was coming, she decided we could only have a girl baby. When Brynn was born in July, Kaitlyn said “Mommy, I got what I wanted. I wanted a baby and I wanted a girl and I got everything I wanted”.  At Brynn’s one-week check-up the nurse asked Kaitlyn if she was the big sister. Kaitlyn looked her straight in the eyes and flat out said, “No, I’m the other mommy”.

To get ready for the arrival of Brynn, Kaitlyn and Ethan, then four and two, started sharing a room. We used to sit in our room listening through the monitor to the two of them talking after bedtime. One night while we were listening, we heard Kaitlyn say, “Ethan? Are you sucking your fingers? (Which he was). Then she said “Sometimes when mommy and daddy aren’t watching, I suck my thumb.” True enough, we never saw her suck her thumb.

Kaitlyn loved arts and crafts, drawing and creating. When Kaitlyn was creating an art project in nursery school depicting plants, unlike the other kids, her drawing actually looked like a real plant with perfectly glued flowers on the branches. She drew amazing butterflies and was one of the first in her class to write out her name. She also loved drawing rainbows, flowers and hearts. She took great pride in her artwork and could spend hours upon hours creating her masterpieces.

In June 2007, our world came crashing down when Kaitlyn (then 3-1/2) was diagnosed with Marfan syndrome. We had never before heard of Marfan syndrome, and even though she exhibited most of the typical signs of the syndrome, none of her pediatricians identified the problem. After the diagnosis, Kaitlyn was seen by a number of pediatric specialists in order to monitor her many cardiac, visual and musculoskeletal symptoms. She started taking a trial medicine twice a day in an attempt to stop her aortic root from growing further. She wore back and foot braces in an attempt to delay spinal surgery and help support her ankles. She also wore glasses for severe near sightedness. With all of the doctors visits, medication, and bracing, Kaitlyn took it all in stride, remaining happy, joyful, loving and playful.

In April 2008, five months before her life came to an end, Kaitlyn was granted a wish from the Make-A-Wish Foundation. We thought it would be difficult to explain what a wish was let alone determine what hers would be. When asked, Kaitlyn never wavered from her first and only answer, “I want to meet the princesses”. Kaitlyn’s trip to Walt Disney World was amazing. She not only met the princesses, but became one herself.  She was treated like royalty. She visited the Bibbidy Bobbidy Boutique, where she had her makeup, hair and nails done. She chose Ariel hair with a Cinderella dress and beautiful sparkly shoes. She ended each day by telling us how it was the “best day ever”.

The experience was something she talked about until the day she died.

No one who met Kaitlyn could ever forget her.  Her keen intelligence, charisma and interest in everyone and everything charmed even the hardest hearts. Her heart was filled with love and she never found it difficult to express that love.  Often, we would be in the car and she would say, “Mommy? I love you.”  There was no confusion, she knew how much she was loved and gave that love back to us.

In her four short years, she accomplished a lot!  Her family strives to keep her memory alive with the help of the National Marfan Foundation. By creating a Memorial Fund in her name, Kaitlyn can continue to touch and change lives. We hope you help support our efforts!

Jessica and Jason Anthony