Press Release

NEWS RELEASE

For Immediate Release                    February 1, 2012

Contact:  Marianne St. Clair                        386-466-6466

Danielle Herb and The Drop Your Reins Experience Needs Our Help to Put Out Her Fire

West Palm Beach, Florida

Danielle’s Story

You may not know her but she’s someone’s child. Her name is Danielle Herb. She just turned 18 years old and for two years, has been afflicted with numerous medical conditions. Initially labeled in elementary school with ADHD, she knew there were better ways to deal with her condition than by using the latest drugs. At 15 years old, Danielle started her own equine therapy program called Drop Your Reins.

By partnering with horses, she created an experiential learning environment that invites open communication, personal reflection, and progressive alternatives for ADD/ADHD and Autistic diagnosed children as well as for those who support them.

Danielle’s future as a young entrepreneur and activist was halted in 2009 when she began to experience severe unexplainable pain in several parts of her body. Before long, she was spending more time in hospitals than out. Tests, needles, and medication were beginning to be routine. Her life as a normal teenager was slipping away. Friends and family found it hard to socialize with her due to the constant pain she was in and she became socially separated. Little by little, more symptoms and pain appeared and her condition worsened. She was finally diagnosed with a very rare neurological disease called RSD/CRPS (Reflex sympathetic dystrophy/Complex regional pain syndrome) which affects almost every part of her body including organs with excruciating unimaginable symptoms some including her colon paralyzed and unable to accept or digest food, cyclical vomiting, passing out (POTS), occasional blindness, connective tissue plasticity which has her joints and ribs come out of place, and seizures.

Danielle and her mom, Marianne St. Clair, have seen medical professionals and specialists up and down the east coast. With so little known about this disease, they have struggled to find doctors who are able to help. While one doctor, who is 1400 miles away from where Danielle’s family lives, has given his full support to Danielle and provided her some relief with ketamine infusions, other medical professionals have refused to treat her citing “her case is too complex” or “her insurance won’t cover the treatment.”

If this wasn’t bad enough, in December 2011 when most kids and families are busy making holiday plans, shopping, spending time with friends, Danielle was rushed to the ER once again but this time she suffered through 18 seizures in two hours and then more the next day. Still no explanation. While in the hospital she had a lumbar puncture and it left her unable to walk.

As a single mom juggling finances and medical bills, countless hours beside Danielle’s hospital bed, and trying to take care of her younger daughter (Leila- 9yo), Marianne does her own research, connects with other parents of kids with the same condition, shares Danielle’s story on social media sites, and prays for answers.

Although documentation states that this disease typically affects people between the ages of 40 and 60, Marianne is learning that more and more children are being affected as well. Danielle’s geneticist specialist is testing her for Mitochondria and other genetic diseases and there is a new test just released by Baylor that she is suggesting might provide the hidden clues as to why her systems continue to break down. The test has a 85% accuracy and defining the obscure and unknown mutations in the DNA. This test itself is $9000.

Because RSD/CRPS and the other symptoms Danielle exhibits aren’t popular or well-known diseases or there isn’t a celebrity afflicted with it, little research is being done. The medical and research communities, as well as the general public need to be more aware of this disease.

You may not know Danielle but she is Marianne St. Clair’s daughter and Leila’s big sister. If you are a parent, you know the one thing that every parent wants is for their child to reach adulthood and live a normal, healthy, and happy life.

Please help spread Danielle’s story so that everyone suffering from this disease can find the right treatment and care.

To contact Marianne St. Clair, send an email to marianne.stclair@gmail.com or phone 386-466-6466

Donations can be made online at www.GoFundMe.com/Team-Danielle

The Drop Your Reins

P.O. 1124

Live Oak, FL 32064


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