Support Savanna Stewart's fight with Ehlers Danlos
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In March of 2016 Savanna Stewart was diagnosed with Ehlers Danlos Syndrome.
Types of Ehler’s Danlos Syndrome
There are six specific types of EDS that stand out to scientists and medical professionals. These classifications are grouped according to a few different rules. Patients are diagnosed with one type through genetic testing and other rigorous types of tests that are performed.
Savanna has the Hypermobility Syndrome. Here is a link
for the full description: http://www.ehlersdanlossyndrome.org/
Over the past three years Savanna has undergone numerous tests and been to several hospitals including KU Med, The Mayo Clinic, Boston Children's Hospital, Caring Medical in Chicago and Florida and most recently The Neurosurgery Foundation - Lifespan in Providence, Rhode Island.
Savanna was an active gymnast, then an injury ended it all. She went from 20 hours a week in the gym to a wheelchair. It started with bilateral labral tears in her hips. She had lots of pain, throbbing, hip popping out, which caused weakness and her to blackout. Which has also led to shoulder, knee and ankle issues.
We went to Kansas University for help on making her feel better. After multiple treatment types, injections, physical therapy we saw no signs of improvement. The lack of healing stumped the doctor and further testing was recommended.
A visit to Boston Children's Hospital was the first to bring up Ehlers Danlos Syndrome, therefore we headed to Mayo to get answers.
Mayo Clinic was where we got our answers. The genetic doctor confirmed EDS Hypermobility ( Ehlers Danlos Syndrome) and that there is no cure for the disease. It was a relief to get answers, but not for the reason of no relief to her pain.
We decided to find some sort of relief for her, that is when we discovered Caring Medical. They offer prolotherapy and stem cell, for people with the kind of disease that Savanna has. We started treatment on our first visit. The treatment is 100's of injections, to the joint/muscle. Savanna has trouble with her hips, knees and ankles. Since this kind of treatment is classified as experimental, we could not use insurance to pay for the treatments. The cost per treatment was $5,000 plus the cost of travel. Travel home is delayed due to the amount of swelling, we can not get on a plane immediately. Plus the locations are in Chicago, IL and Fort Myers, FL, and we live in Kansas City. Savanna had treatment every 11 days for the first 2 months, then we went monthly. Slowly we were able to cut back, but not for long. After 6 months, we took a short break for about 3 months, then went back for more treatment. This was the hardest financial burden on our family. The cost of treatment, airfare, rental cars, and meals, added up very quickly.
Finally after a year with Caring Medical, they recommended more tests, and referred us back to our primary doctor. Because she was still having problems. We decided to have her tested for food sensitivities, and more MRI's.
Savanna is now gluten free and dairy free to help with inflammation in her joints. She started to have more knee issues, dislocations of the knee, popping of the elbows.
Last week we visited a doctor in Rhode Island after a 10 week wait for the appointment and several tests here in KC just to see her. We were hoping for some sort of relief there, but that was a bust and they stated they could do nothing for her. A total waste of money and time, not to mention a huge disappointment for Savanna.
The cost of travel, deductibles, experimental treatments, hotels, meals we have spent over $50,000. It has been a financial burden on our family, dipping into savings, college funds and retirement funds.
So our goal is to help her in anyway we can, relief of pain, make her smile and just let her be a normal 14 year old teenager.
With your donations we can continue stem cell treatment in Florida and also continue to look for more doctors and clinics that can help her. EDS is a new disease so finding treatment or doctors with the knowledge to help is hard to find. Anything will help.
Thanks for taking the time to read Savanna's Story.
Brent and Susan Stewart
Types of Ehler’s Danlos Syndrome
There are six specific types of EDS that stand out to scientists and medical professionals. These classifications are grouped according to a few different rules. Patients are diagnosed with one type through genetic testing and other rigorous types of tests that are performed.
Savanna has the Hypermobility Syndrome. Here is a link
for the full description: http://www.ehlersdanlossyndrome.org/
Over the past three years Savanna has undergone numerous tests and been to several hospitals including KU Med, The Mayo Clinic, Boston Children's Hospital, Caring Medical in Chicago and Florida and most recently The Neurosurgery Foundation - Lifespan in Providence, Rhode Island.
Savanna was an active gymnast, then an injury ended it all. She went from 20 hours a week in the gym to a wheelchair. It started with bilateral labral tears in her hips. She had lots of pain, throbbing, hip popping out, which caused weakness and her to blackout. Which has also led to shoulder, knee and ankle issues.
We went to Kansas University for help on making her feel better. After multiple treatment types, injections, physical therapy we saw no signs of improvement. The lack of healing stumped the doctor and further testing was recommended.
A visit to Boston Children's Hospital was the first to bring up Ehlers Danlos Syndrome, therefore we headed to Mayo to get answers.
Mayo Clinic was where we got our answers. The genetic doctor confirmed EDS Hypermobility ( Ehlers Danlos Syndrome) and that there is no cure for the disease. It was a relief to get answers, but not for the reason of no relief to her pain.
We decided to find some sort of relief for her, that is when we discovered Caring Medical. They offer prolotherapy and stem cell, for people with the kind of disease that Savanna has. We started treatment on our first visit. The treatment is 100's of injections, to the joint/muscle. Savanna has trouble with her hips, knees and ankles. Since this kind of treatment is classified as experimental, we could not use insurance to pay for the treatments. The cost per treatment was $5,000 plus the cost of travel. Travel home is delayed due to the amount of swelling, we can not get on a plane immediately. Plus the locations are in Chicago, IL and Fort Myers, FL, and we live in Kansas City. Savanna had treatment every 11 days for the first 2 months, then we went monthly. Slowly we were able to cut back, but not for long. After 6 months, we took a short break for about 3 months, then went back for more treatment. This was the hardest financial burden on our family. The cost of treatment, airfare, rental cars, and meals, added up very quickly.
Finally after a year with Caring Medical, they recommended more tests, and referred us back to our primary doctor. Because she was still having problems. We decided to have her tested for food sensitivities, and more MRI's.
Savanna is now gluten free and dairy free to help with inflammation in her joints. She started to have more knee issues, dislocations of the knee, popping of the elbows.
Last week we visited a doctor in Rhode Island after a 10 week wait for the appointment and several tests here in KC just to see her. We were hoping for some sort of relief there, but that was a bust and they stated they could do nothing for her. A total waste of money and time, not to mention a huge disappointment for Savanna.
The cost of travel, deductibles, experimental treatments, hotels, meals we have spent over $50,000. It has been a financial burden on our family, dipping into savings, college funds and retirement funds.
So our goal is to help her in anyway we can, relief of pain, make her smile and just let her be a normal 14 year old teenager.
With your donations we can continue stem cell treatment in Florida and also continue to look for more doctors and clinics that can help her. EDS is a new disease so finding treatment or doctors with the knowledge to help is hard to find. Anything will help.
Thanks for taking the time to read Savanna's Story.
Brent and Susan Stewart
Organizer
Sue Monteil Stewart
Organizer
Olathe, KS