Save Lydia

Save Connor

The Basics

Lydia Rachal lives with her mom Morgan, dad Kirk, and older sister Heidi in Louisiana and turned 2 years old on Oct. 16. And she is fighting for her life.

This summer, Lydia’s family was blindsided when she was diagnosed with Sanfilippo Syndrome, a terminal degenerative disease like Alzheimer’s in children. It was only by chance that Morgan’s mom saw a video of a child who looked just like Lydia and has Sanfilippo Syndrome.

Lydia has been dealing with several “common” issues since birth, such as recurring ear and sinus infections, GI issues, sleep disturbances, distended belly, and prominent eyebrows, but was meeting her developmental milestones, so her pediatrician hadn’t been concerned. But after seeing the video and hearing that these were all early symptoms of Sanfilippo, Morgan knew in her gut and requested that Lydia be screened for Sanfilippo Syndrome. When the diagnosis come in, it was the worst day of Morgan and Kirk’s lives.

But Morgan and Kirk who aren’t people who let anything get them down. Despite the heartache, they are led by their deep faith and have chosen to fight, to help fund clinical trials that could save Lydia and other children with Sanfilippo Syndrome.

They began sharing their story with their community and then the world through social media. They vowed to raise $1 million to fund clinical trials that might give Lydia a chance at life. As of October 2024, Morgan’s TikTok account, @HopeForLydia, had already grown to 106,000 followers and they have been featured by news outlets around the world.

On Lydia’s 2nd birthday, Oct. 16, Morgan and Kirk continued their fight to raise $1 million by lauching a three-minute video sharing their story. Their hope is that the video will reach the right people around the world and help fund clinical trials that could save Lydia’s life.

The video and fundraiser are at GoFundMe.com/SaveLydia.

Media Coverage

For Media Outlets

Save Lydia Photos

High-resolution files of the following photos, plus personal photos from the family, are available for use in your content. Access and download the images at this link. Please include photo credit to The Rachal Family for the images with “Family Photo” noted in the file name.

Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome
Save Connor - viral video to save Connor from Sanfilippo Syndrome

Contact Information

If you are interested in more information about Save Lydia, Sanfilippo Syndrome, and current research, experts are available to speak with you. Email Katie Walton at Katie@CureSanfilippoFoundation.org if you would like to connect with them.

Available for Interview
Morgan & Kirk Rachal

Morgan & Kirk Rachal

Available for interview to discuss Lydia, their fight, and the "Save Lydia" video

Kirk and Morgan live in the Natchitoches, LA, area with their daughters Heidi and Lydia. Morgan is an LPN clinical instructor at Bossier Parish Community College and works at Emergency Room Nurse (RN) at Natchitoches Regional Medical Center and Day Surgery RN at Natchitoches Regional Medical Center. Kirk works for Jackson & Jackson Housing as a welder, pipefitter, millwright helper, and carpenter helper.

Glenn O’Neill, President & Co-Founder, Cure Sanfilippo Foundation

Glenn O’Neill, President & Co-Founder, Cure Sanfilippo Foundation

Available for interview via Zoom to discuss the Foundation, research on Sanfilippo, and "Save Lydia"

Glenn is the father of Eliza O’Neill, who was diagnosed in 2013 with Sanfilippo Syndrome (MPS III). He and his wife Cara co-founded the 501c3 non-profit Cure Sanfilippo Foundation with a mission to advocate and fund research for treatments or a cure for all Sanfilippo Syndrome children. He believes the mission will be achieved through kindness, humility, inspiration, and determination … and has found collaboration with like-minded people and organizations is the key to success.

In nine years, the Foundation has grown to include more than 115 partner-families of children with Sanfilippo Syndrome and helped fund more than 35 grants around the world, leading to three clinical trials for children, so far.

Glenn was the 2017 Sanofi Genzyme Torch Award winner and received the 2017 GoFundMe Trailblazer award. Glenn and Cara were awarded the Portraits of Courage Honor by the National Organization of Rare Disorders in 2015, as well as a Tribute to Champions of Hope finalist for Global Genes. In 2017, they received the South Carolina Child Advocate Award from the SC American Academy of Pediatrics.

Talking Points:

ABOUT SANFILIPPO:

  • Sanfilippo Syndrome is like Alzheimer’s, but in children.
  • Sanfilippo Syndrome is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years. 
  • Sanfilippo Syndrome is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell, and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death.
  • Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.
  • Children are born with Sanfilippo Syndrome, but it is invisible until they start exhibiting developmental delays or regression in their early years.
  • Early symptoms of Sanfilippo Syndrome are often: speech delays, frequent ear infections, poor sleep, “Autistic” behaviors, and hyperactivity.

ABOUT THE RESEARCH:

  • Cure Sanfilippo Foundation is constantly identifing promising research underway that could lead to clinical trials. These include gene therapy, substrate reduction, and drugs already-approved for other diseases that could also help children with Sanfilippo.
  • All of these strategies lessens the build up of the toxic cellular waste in children’s brains and bodies, which reduces neuroinflammation in the brain and prevents development of Sanfilippo’s many disease symptoms. It also improves how cells throughout the children’s brains and bodies function.
  • Donations to “Save Lydia” on GoFundMe go directly to Cure Sanfilippo Foundation, which is funding these research projects.

ABOUT CURE SANFILIPPO FOUNDATION

  • Cure Sanfilippo Foundation, a 501(c)3 non-profit (Tax ID 46-432131), leads in driving research to accelerate discovery of a cure for Sanfilippo Syndrome.
  • Learn more about the Foundation.
  • Cure Sanfilippo Foundation has partnered with other families to conduct million-dollar campaigns — Saving Eliza, Saving Carter, and Save Connor — that have been covered by the TODAY Show, People, Inside Edition, The Doctors, and Fox News.

Credits

Special thanks to Joe Lane of Anointed Media LLC (https://www.anointed.media) for lending his tremendous videography, video edit, music and audio editing skills, and passion to this project.