Our journey with TD began on August 28th, 2019, when our daughter Paisley was born. She spent her first 184 days in the hospital, undergoing numerous surgeries to treat her condition. After 6 months and many challenges faced, we were able to bring our Paisley home.

While home, Paisley flourished and developed well. Despite her condition, she was one of the happiest children we’d ever seen. She had an incredible personality, full of sassiness and humor. She loved watching the Atlanta Braves and Winnie The Pooh.

On May 17th, 2023, due to her condition, our Paisley sadly passed away. Though short lived, her life and story will stand the test of time and live on forever. Through her will to fight, her endearing smile, and her gentle natured soul, we hope she will inspire and give hope to other families dealing with the difficulties of TD.

Whether you’ve just learned your child has been diagnosed with TD, or are in the midst of dealing with the loss of your own child, we are here for you. We will offer a listening ear, share our experience, and help support you through your own journey.

We hope Paisleys story will shine a bright light on those afflicted with TD and that the Foundation will honor her life and help others financially and through having a community long into the future.

Know that you are not alone

Chris & Melissa Courson.

At 23 weeks during an anatomy scan, Sarah was diagnosed with Thanatophoric Dysplasia (TD).  Her fetal MRI scan at 28 weeks showed she only had 23% lung volume for an average baby at that gestation.  Sarah was born on January 31st, 2023 at 32 weeks 3 days gestation.  During my pregnancy, doctors informed me that it would be impossible for Sarah to survive outside the womb, even with medical intervention. 

I made the decision to continue carrying Sarah and opted for medical intervention against doctor recommendations. Throughout our journey, I have researched survivor cases, various diagnoses and surgeries associated with TD survivors, and become close with other TD families. I now try to support other families as well, just as they supported me.

Since birth, Sarah has continuously proven doctors wrong. Sarah has required 4 surgeries to allow her the longest life possible, and an additional 2 surgeries to increase her quality of life. Sarah spent the first 483 days of life in the hospital and has continued to thrive since making her way home.

Sarah currently lives at home with her older brother and myself, and has nursing staff, OT, PT, SLP therapies, and an early intervention teacher who works with her. Since being home, Sarah has enjoyed many outings to include trips to the park, the farmers market and grocery store, Valley Mall of America and amusement park, an aquarium, a friend’s birthday party, and more.

We are beyond grateful for the emotional, physical, and financial support we have received from The Paisley Foundation and TD community as a whole. As a single parent with a full time job, the support and guidance we’ve received has made living paycheck to paycheck a bit less stressful, giving me the opportunity to focus more on my children and making their lives enjoyable. 

Thank you The Paisley Foundation for helping me to improve the quality of life for my kids.

With a grateful heart,

Amber - Sarah’s mother and advocate

Our first-born child, Samuel, was born four weeks in early August, 2005. He needed immediate intervention which included a ventilator and specialized care in the pediatric intensive care unit. In the weeks ahead, Samuel was diagnosed with a rare form of dwarfism called Thanatophoric Dysplasia. Samuel faced many challenges breathing on his own, and after 6 months of hospitalization, he was able to come home on a home ventilator and 24/7 nursing care. 

Samuel thrived at home and loved to play with his mylar book and colorful balloons. His smile lit up the room and his family, friends, and caregivers fell in love with his precocious nature. At 1 year old, Samuel celebrated his momentous birthday with a room full of balloons and many well-wishers. That first year, he experienced his first taste of baby food and never looked back. 

At three years old, Samuel received an amazing trip of a week’s vacation at Give Kids The World, in Orlando, gifted to him by the Make-A-Wish Foundation.  He went from only knowing the confines of home and doctor’s offices to experiencing dolphins, merry-go-round rides and even venturing out to his first restaurant outing. This adventure opened the doors for Samuel to travel far beyond his hometown. He would eventually travel to Washington D.C., through New York City, and on to Canada further opening his horizons.

A miracle happened when Samuel turned 9; he shed his ventilator. This is something we were never encouraged to believe could happen. Samuel thrived not being tethered to his ventilator and further opened his world to one of joy and exploration.

Samuel celebrated his 19th Birthday this year. We are so thankful to God for this amazing milestone. We share our journey in hopes of encouraging other families to face trials with faith and to believe in miracles. 

We encourage you to reach out and learn more about Thanatophoric Dysplasia, how we navigated the medical landscape, and to help you find encouragement you need when you need it most.

No pregnant woman facing a negative pregnancy diagnosis should be without hope.

Evelyn Mann