Dysautonomia Hope

 
Raised: $12,481.00
Goal: $20,000.00
 
 
 

Created by

Renee Sheffner

120 Friends

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http://www.carepages.com/dashboard Renee & Cherise Sheffner Mail box: 7671 Ellis Ave. # B, Huntington Beach, CA 92648 Cherise, my daughter is a sweet 16 year old young girl, who has rec... more

 
 
 
 
 
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Updated posted by Renee Sheffner 3 months ago

Dear Friends and Family,

We would like to thank you for your support and prayers during our time of need this year. Because of you we were able to go to the Mayo Clinic in Minnesota where we got answers! Cherise was diagnosed with a genetic disorder: Ehlers-Danlos Syndrome, a connective tissue disorder, which is the cause of her dysautonomia. Their respiratory treatment has enabled her to avoid ICU visits and her wheel chair thus far.
They recommend GI and genetic follow up, which can be done in California. However, they are recommending a 3 week return visit for a program designed to re-boot her autonomic nervous system. This may or may not be in God’s plan.
Please continue to keep her and her doctors in your prayers, so in the future she may have a day without pain.
Presently she is still home schooled and working up her endurance. Her GI problems have progressed, however we have faith the Doctors will soon resolve this.
She keeps a great attitude & continues to bring joy to all.
May God bless you as you have blessed us!
Merry Christmas!
Renee and Cherise

 
 
 

Updated posted by Renee Sheffner 5 months ago

Cherise has been out of the wheelchair for a little over a week! She is managing her limits, which makes a difference. She is focusing on getting caught up on her home schooling and studying with her sister Raquel. Now that her endurance has improved, she needs to begin on muscle strength which will help with her pain. GI doctors follow up forth coming. Thank you so much for your prayers. God is so amazing!

 
 
 

Updated posted by Renee Sheffner 5 months ago

We got some answers at the Mayo Clinic in Rochester, MN. They diagnosis Cherise with Ehlers Danlos Symdrome (EDS) a genetic disorder, that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Her Dysautonomia/postural orthostatic tachycardia syndrome (POTS) is a result of EDS. This probably also explains my older daughter’s Chiari Malformation and scoliosis.

The Mayo Clinic was wonderful and understood we were self pay so they recommended the further testing of GI, respiratory and genetic to be done in California where our insurance can cover it. However, they recommend we come back for their Dysautonomia 3 week program, but it is $35,000. This program has had great success in improving the autonomic nervous system dysfunctions however out of budget, well almost anyone’s budget.

EDS has no cure and treatment is only supportive. The Mayo Clinic recommended a diet and exercise program designed for her. We had 4 doctors brings up the mold in our home and recommended we try to change that for several reasons including she allergic to it.

We also learned growth hormone is a stress on the autonomic nervous system. The week before we left for Minnesota, she was having a lot of issues and that same week she grew ½ inch. Mayo accessed those issues may be due to growth hormones in addition to low blood value. So the good news is…when she stops growing we will no longer have the growth stress on her autonomic nervous system. There are several stressors on the autonomic nervous system like; exercise, body position change, digestion, illness, body temperature change and more. We found that when she has more than one stressor at a time, her autonomic nervous system may malfunction. This knowledge gives us an understanding on how to keep her balance.

Presently, Cherise has been able to move her based line where she is out of the wheel chair more! Yeah! But she caught a bad cold after being home.

Our immediate goal:
• Complete recommended GI testing
• Rule out vascular EDS with genetic Dr.
• See ENT Dr. for vocal cord dysfunction
• Move! Where we have more sunlight, which is not only therapeutic, it will keep mold at arms bay.
• Trade in my car for a mini van as it’s easier to lift a wheel chair in to.

Future Goal:
• If it’s in God plan to go back to Mayo Clinic this summer
• Attend senior year at school.

We appreciate everyone support and prayers. God has placed so many amazing people in our lives that made such a difference. We are so grateful and thankful. God bless you all.

 

Mayo blood tests

Mayo Clinic awaiting shuttle

Mayo helping hands

 
 
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Created by Renee Sheffner on June 26, 2013

http://www.carepages.com/dashboard
Renee & Cherise Sheffner Mail box:
7671 Ellis Ave. # B, Huntington Beach, CA 92648

Cherise, my daughter is a sweet 16 year old young girl, who has recently been diagnosed by the Mayo Clinic with Edlers Danlos Syndrome, causing Dysautonomia, the invisible illness. Dysautonomia refers to a disorder of the autonomic nervous system (ANS). ANS is a part of the nervous system that controls involuntary functions in the body, such as heartbeat, widening or narrowing of the blood vessels, breathing, body temperature control, pupil dilation, and digestion, amongst others. When something goes wrong in this system, it can cause serious problems and pain.


With the support and prayers of many we were able to go to the Mayo Clinic in Minnesota where we received answers! They were willing to work with us and set up a payment plan for the balance of the bill and gave doctors in california recommendations on follow up. However they recommend we go back for a 3 week program costing $35,000. to reboot her autonomic nervous system.


Thank you in advance for your support and prayers!
With all our love Renee & Cherise





 
 
 
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Renee, I am so thamkful you eere able to get at least some viable answers at Mayo Clinic. But I do have a question for you.

posted by Lisa Scharlin Elliott 5 months ago

Cherise, my sweet niece. I want you to know how much you are loved and what a joy and inspiration you are to us. There are many prayers for you and I have no doubt you will be able to go to the Mayo Clinic where the doctors are experts in this field to be able to fully diagnose and treat your condition(s). I am reaching out to my family and friends to help either by donating or just by prayer to help you get through this. I cant believe you are already 16 years old, Happy Birthday. We know this was not the birthday you had expected for your sweet 16. I feel in my heart that once we are able to get you the care and treatment that is needed, that your birthdays in the future will be bright and happy. Uncle Fred and I are sending you hugs and love and you are in our prayers. Love You!!!!! Aunt Val

posted by Valerie Carlson 9 months ago

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WE pray you will get better - Our love & prayers go out to you and your family

 

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