Danielle Herb – High Cost Associated With Rare Diseases

by Marianne St. Clair on February 1, 2012

February 2, 2012

DANIELLE HERB

Help Us Put Out Her Fire

ADD – Danielle was diagnosed at a very young age with ADD. In her early childhood she lived in South Florida and would swim in the family pool. It was later found that the chlorine in the pool was toxic to her system and caused her to “bounce off the walls”. She also judged because could not sit still and do one thing or read in a book for an hour. She did not want to sit still nor at times could she. It was not until she relocated with her mother to North Florida that all her underlying allergy symptoms became full blown asthma. The doctors wanted her mother to give her medicines and allergy shots but they chose a more holistic path.

Love Affair With Horses Began – At around age 5, Danielle was introduced to horses. She found her passion and was like a kid in a candy store. She lived, and breathed them.The horses were very good for her because when she was around them, she became focused and calm. They allowed Danielle to learn how to calm her own energy down which became a valuable lesson and because the horses are sentient animals they helped her feel new things about herself and her environment. She studied and listened to them.

Home-Schooling – Danielle’s own natural intrinsic thirst for learning was fostered by designing her schooling to revolve around horses. She learned math while budgeting for the farm and her horses care. She studied veterinarian skills and administered all her animals shots, medicines and wound care. She helped perform surgeries with vet’s and worked with them as a key and respected partner even though she was only 12 – 17 years old. She endlessly researched herbs and holistic remedies to keep them healthy and able to preform at their optimum ability.

Won Tiger Wood’s Grant – From Fear To Freedom – At 13 years old Danielle wanted to help people overcome their fear of horses. She started working with anyone she could find who either feared being around horses or riding one. That is how she developed her program From Fear To Freedom. Her mom found a grant that was sponsored by Tiger Wood and Target Stores.

Danielle’s life has revolved around her love and passion for horses. She rode from sun up until sun down, only taking breaks to take a dip in the river, chit chat with her riding partners or sleep, every once in a while in her early teen years. She enjoyed living a simple life in a rural small community in North Florida. She and her closest friend spent many days traveling the trails and dreaming of their future riding careers with horses.

Danielle showed extreme focus and dedication towards furthering her knowledge of horses and her riding ability. The sentient beings are everything to her. She began working for a neighboring farm caring for young race horses and preparing them for racing so she could earn money to attend a week long 4-H horse camp. She also was asked to apprentice under a jumping riding instructor and moved away from home to train full time at 13. At age 14 she was personally mentored as a working student by one of the world’s top Dressage rider. The Start Something Grant was influenced byTiger’s father.The book written by Earl Wood “Start Something” teaches entrepreneurship and importance of giving back to the community. Tiger was raised by the principles in the book and wanted to share them to make a difference in other children. Danielle entered her program, From Fear To Freedom. She worked with 20 people ranging in age from 5 – 75 and helped move them beyond their fears. She organized a group trail ride and lunch along the Suwannee River for all the participants to enjoy their new found freedom. It was a unforgettable day enjoyed by all. She was awarded their highest award. $5000 and used that money to purchase a round pen and other equipment to further her work teaching and helping others.

Teacher – At age 13 she and her mother Marianne, a life coach, start a school to help other children who might have benefit from learning in a non traditional way.They opened a small private school in 2006 with a small group of children that came each day to experience school in a whole new way. The school did not have walls and was held outdoors. The curriculum was life, nature and the lessons presented themselves each day for the children. Marianne, Danielle, the horses and each child equally participated in the experience. Danielle developed games using the horses that assisted the children in gaining higher self esteem and they began to see life in new ways.

Entrepreneurship – She had high hopes of competing in the equestrian trials at the Olympics until she felt her life going down another trail., entrepreneurism. The children in their school were having wonderful success and new changes due to her work, that she and her mother decided there must be other children this program could help all around the world. She also felt that horses needed help as well and partnering them children with to heal both would be a win win.

DropYour Reins – Danielle and Marianne co-founded an experiential learning program in an 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. They traveled giving clinics at farms and riding barns that hosted them sharing their program with new and different audiences. The program quickly when from a small town program to being known internationally due to the many radio interviews they gave and articles that were written about their work. Danielle was asked to speak about her program at Rotary, other entrepreneur summits and schools. She was interviewed by Physicians and Psychologists and asked to lead programs for them to incorporate horses into their practices. She held summer programs and camps.

Danielle was very driven and had a goal to help 1 million people with her programs until…….

The Nightmare Began – One day while riding, after a huge storm and the pastures where covered in a foot of water, Danielle was riding a young horse that was relatively inexperienced. He stepped down into a hole and got very spooked. He was scared and the more he bucked and spun in the water the more frightened he became and they both were a wet slippery accident waiting to happen and it did. Danielle eventually came off and the horse started pounding his

hooves down on top of her. She was not too severely injured from what the outside appearances revealed but lurking inside was the beginning of her nightmare.

She was taken by ambulance a week later to a hospital because of a pain so severe in her right lower abdomen that was relentless and would not go away. She spent 10 days and under went many tests and left with a diagnosis of fibromyalgia. We thought the doctors had lost their minds but now realize they were not far off in their original thinking. She continued for many months trying to ride through the pain and maintain her high spirited attitude but the pain continued to wear on her.

The Unknown – In 2010 Danielle spent over 60 days in hospitals and another 100 in doctors and physical therapy offices being treated for her symptoms. Danielle has been abused by the system that was supposed to be there to help her heal and protect her. She has been handcuffed and left to scream in the most extreme pain known to man for 7 days while the doctors were thinking it was her mother that was the problem. She was kept in a hospital and threaten by the child protection services physician that if she did not stop screaming in pain they would throw her in a psych ward. She has had to deal with more in her 18 years than most will ever have to endure in their old age.

Diagnosis – Since being diagnosed with RSD/CRPS in June, 2010 and as her issues continue to present themselves she has since been diagnosed with POTS-Postural OrthostaticTachycardia Syndrome, Dysautonomia, Gastroparesis and Mitochondria Disease

Daily Life – Danielle is extremely restricted and limited in her ability to ride and care for her horses. She is unable to run her once highly sought after programs and clinics.  She struggles everyday to keep walking, to stay out of a wheelchair, keep from getting injured when she passing out, to keep food down due to frequent throwing up, sometimes just getting a fork to her mouth, reading because of the visual changes she experiences and the constant gnawing of the relentless chronic pain everyday that feels like she has been dowsed with gasoline and lit on fire.

Treatment – She is being treated for these very serious conditions at the University of Florida and because her condition is so rare the other specialists are spread out across the East Coast from Rhode Island to South Florida.  She is in need of treatments of Ketamine Infusions that only a handful of Dr’s in the U.S. perform. Some of her care is overseen by a Pain Specialist in Rhode Island and some of the other complex issues are managed by a biochemical geneticist specializing in mitochondrial disease.

Her Family Suffers – Her step-father whom is a deputy sheriff was accused of physical or mental abuse and at one point authorities were looking at her mother for Munchausen Syndrome. They spend all of the family resources on transportation and gas, repairs to the 1996 van they had to purchase to transport her to her appointments because vibrations in their main truck caused Danielle’s pain to increase because her nervous systems gets activated, supplements, heat patches, equipment, flights or gasoline to out of town doctors, office visit charges for physicians that are out of network and not covered. Her step-father remains home caring for the horses and family pets so Marianne can be on the road getting Danielle to her appointments. It has caused him to be alone and not see much of his only daughter’s growing up.

Leila, Danielle’s nine year old sister spent 2 years traveling with her mother and sister. She has had to sleep in many ER’s and hospital rooms. Last winter she spent 3 months living in Rhode Island Ronald Mc Donald house after they were trapped up there with her sister in the hospital during Christmas. She was unable to attend school and now the focus is on getting some help to ensure Leila can remain in the school she has entered now.

Marianne had to stop the family business she spent 2 years working on with Danielle for 2 years and devote all of her attention and focus to Danielle’s care. She can not seek work outside of the home because Danielle requires full time care. Marianne, while loving her daughter needs some help so that she can get some time away to replenish. Her health is suffering due to the intense 24/7 stress of Danielle’s condition. She is under constant stress on how she is going to provide food for her family and transportation to get Danielle to her next appointment.

The Future – There is no known cure that the medical profession can offer at this time. Like other Neurological Diseases like MS, ALS, and Mitochondria, there is managing of her symptoms and trying to keep her being able to have some quality of life.We remain hopeful that she will be cured and keep our faith while getting her the best care both holistically and traditionally we can find and afford.

RARE DISEASE DOWNSIDE – Many of the treatments that might make a difference are still not approved by the medical association and her family has to come up with the funding. One treatment that is showing promise is Ketamine infusions.The treatment protocol is approved but most insurance companies won’t pay for it. Her genetics specialist has prescribed supplements called the mito cocktail that are a combination of vitamins that are proven to help build up her body and immune system and have positive results but they have to be compounded by a special pharmacy and are not covered by insurance. Alternative therapies such as cranial sacral and massage help to decrease the sympathetic nervous system flight and flight response.

Travel to Atlanta – $1000 every 4 months – $3000 per year

Travel to Gainesville – $500 each month – $6000 per year

Travel to Pawtucket, RI – $1500 bi-monthly – $9,000 per year

Mitochondrial Specialist ( not covered by insurance ) $1200 per year

Ketamine Infusions Monthly ( not covered by Insurance) $4500 bi-monthly – $27,000

The Bridge – 3 week Rehabilatation Program in Utah $11,000

http://www.thebridgerecover ycenter.com/rsd-reflex-sympathetic-dystrophy-treatment-center.html

Supplements – Mitochondrial Cocktail – $200 monthly – $2400 yearly

http://www.mitoaction.org/blog/mito-cocktail

Alternative Therapies to help manage symptoms – Hyperbaric Chamber, Cranial Sacral Therapy, Hydrotherapy, Neuro Brain Retraining $500 – $1000 per month

Danielle remains hopeful she will heal and begin to thrive again. She still makes a difference everyday in the lives of those she touches. She is teaching nurses and doctors about compassion and how to treat and listen to their patients. She still inspires us all to Drop Your Reins and trust that once you fall off your horse, you have to jump back on and pick up the reins no matter how difficult life may be. She continues her fight to live another day and walk another step. She smiles at those who look and loves them all because she knows the struggles that others are going through.They many look ok on the outside but like her, they may be living with a wildfire ragging inside.

There is a high cost associated with Danielle’s care but her life is priceless.

Contact Marianne St. Clair

386-466-6466

marianne.stclair@gmail.com

Donations can be made online

www.GoFundMe.com/Team-Danielle

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