Tiffany's Next Step
Donation protected
My daughter Tiffany has been diagnosed with CRPS (Complex Regional Pain Syndrome). She has been seen by a dozen doctors and numerous tests have been run to determine this life altering disease.
CRPS is a rare condition that effects less than 6 persons per 100,000 in the US, it is even rarer in children of my daughters age. (no stats have been released for this)
Complex regional pain syndrome (CRPS) is a chronic pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area. It is a disease that spreads throughout the body.
1. Changes in skin texture on the affected area; it may appear shiny and thin
2. Constant pain, burning, throbbing, radiating pain
3. Brain fog, poor concentration, visual disturbance
4. Stiffness in affected joints
5. Problems coordinating muscle movement, with decreased ability to move the affected body part
6. Abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet
These photos show the effects that CRPS has on my daughters leg. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb.
Tiffany is a beautiful 15 year old girl who has had her life cruelly and incomprehensibly reduced and now lives in constant pain.
She struggles every day both physically and mentally to try to come to terms with what has happened to her. Often asking the inevitable question, "why me?"
She was diagnosed with CRPS in mid 2018 after extensive tests and MRI scans. It was a long time coming and it has been physically, mentally and emotionally draining on us all, but none more than Tiffany.
Before her MRI scan and in the scanner..
She keeps fighting everyday, despite the pain, despite the hopelessness that this condition brings. "She is my inspiration"
Suffering from a neurological disorder has been incredibly isolating, hopeless and frightening. She can barely walk and her right leg is racked with pain all of the time. She's had to be removed from school and is now home schooled because of the sheer pain that she is in from simply walking around school like a normal 15 year old would do. This has further added to her isolation, as she can no longer fully interact with her friends. The normal social activities of her friends are now something that Tiffany can't do due to the physical restraints of her condition.
It's heart breaking to see a girl who was so active with cheerleading, sports and gymnastics and general socialising become a near recluse who lives in constant pain.
Tiffany was so proud of her cheerleading and wore a smile every time she wore her uniform.
My beautiful girl with a brave smile that's masking her pain.
Although this is a physical condition it has also taken a toll on her mental stability and self worth. This condition is dubbed the 'suicide disease,' as those who suffer from it have been known to take their own life in a desperate attempt to find relief. I can't bear to see the suffering that she's enduring. As a parent I would do anything to stop her suffering, to take her place if I could. But there is little I can do to ease her immediate suffering.
There is a treatment center, SPERO Clinic in Arkansas, that offer a 12 week program to treat and heal her.
This would be the perfect solution, however they will not accept insurance payments. They deal with upfront privately funded payments only. The cost is $36,000 for the treatment.
https://thesperoclinic.com/
Due to the distance and the duration of the treatment program I will have to move my family there, this will involve giving up work for the full 12 weeks, renting a home, food and general living costs. This would mean that I would need to find around $8,000 -$9,000 for that 12 week period.
But, with your help there is something that be done to help my little girl.
Can I ask you a couple of questions:
"How much would you value your own independence, your own pain free life?"
"Would it be worth $1.00 or $1,000,000's?"
"Would you be generous enough to help me to help my beautiful daughter get the specialised treatment that she so desperately needs?"
"Will you help me to give Tiffany back her beautiful smile?"
CRPS is a rare condition that effects less than 6 persons per 100,000 in the US, it is even rarer in children of my daughters age. (no stats have been released for this)
Complex regional pain syndrome (CRPS) is a chronic pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area. It is a disease that spreads throughout the body.
1. Changes in skin texture on the affected area; it may appear shiny and thin
2. Constant pain, burning, throbbing, radiating pain
3. Brain fog, poor concentration, visual disturbance
4. Stiffness in affected joints
5. Problems coordinating muscle movement, with decreased ability to move the affected body part
6. Abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet
These photos show the effects that CRPS has on my daughters leg. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb.
Tiffany is a beautiful 15 year old girl who has had her life cruelly and incomprehensibly reduced and now lives in constant pain.
She struggles every day both physically and mentally to try to come to terms with what has happened to her. Often asking the inevitable question, "why me?"
She was diagnosed with CRPS in mid 2018 after extensive tests and MRI scans. It was a long time coming and it has been physically, mentally and emotionally draining on us all, but none more than Tiffany.
Before her MRI scan and in the scanner..
She keeps fighting everyday, despite the pain, despite the hopelessness that this condition brings. "She is my inspiration"
Suffering from a neurological disorder has been incredibly isolating, hopeless and frightening. She can barely walk and her right leg is racked with pain all of the time. She's had to be removed from school and is now home schooled because of the sheer pain that she is in from simply walking around school like a normal 15 year old would do. This has further added to her isolation, as she can no longer fully interact with her friends. The normal social activities of her friends are now something that Tiffany can't do due to the physical restraints of her condition.
It's heart breaking to see a girl who was so active with cheerleading, sports and gymnastics and general socialising become a near recluse who lives in constant pain.
Tiffany was so proud of her cheerleading and wore a smile every time she wore her uniform.
My beautiful girl with a brave smile that's masking her pain.
Although this is a physical condition it has also taken a toll on her mental stability and self worth. This condition is dubbed the 'suicide disease,' as those who suffer from it have been known to take their own life in a desperate attempt to find relief. I can't bear to see the suffering that she's enduring. As a parent I would do anything to stop her suffering, to take her place if I could. But there is little I can do to ease her immediate suffering.
There is a treatment center, SPERO Clinic in Arkansas, that offer a 12 week program to treat and heal her.
This would be the perfect solution, however they will not accept insurance payments. They deal with upfront privately funded payments only. The cost is $36,000 for the treatment.
https://thesperoclinic.com/
Due to the distance and the duration of the treatment program I will have to move my family there, this will involve giving up work for the full 12 weeks, renting a home, food and general living costs. This would mean that I would need to find around $8,000 -$9,000 for that 12 week period.
But, with your help there is something that be done to help my little girl.
Can I ask you a couple of questions:
"How much would you value your own independence, your own pain free life?"
"Would it be worth $1.00 or $1,000,000's?"
"Would you be generous enough to help me to help my beautiful daughter get the specialised treatment that she so desperately needs?"
"Will you help me to give Tiffany back her beautiful smile?"
Organizer
Debi Herren
Organizer
Bosque Farms, NM
