Dysautonomia Hope

$12,881 of $17.4k goal

Raised by 137 people in 44 months
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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Update 13
Posted by Renee Sheffner
2 months ago
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It has been a long time since an update has been given, sorry for that. These past couple years have included me, Cherise, having to regain strength and motivation to conquer the illness I have at hand. Thankfully I have been incredibly blessed to be able to have graduated in 2015 and now be excelling in college. This journey has not been smooth sailing, in fact just these past few weeks have been a rough one. For the past year, I have been having pains in my ovaries and my back. There have been a few cysts on my ovaries that have burst so they did further testing. A few weeks ago they diagnosed me with Polycystic Ovarian Syndrome, another diagnosis on top of all that I already have. My doctor told me that I have a medium sized cyst on one of my ovaries, fluids from one recently bursting, and several littler cysts lining the inside of both of my ovaries. During this visit she told me that there was nothing she could do about my worsening symptoms or pain since the medication she tried was not working. Fortunately she was eager to refer me to extra help. A week later I went to a gynecologist, she gave me a new medication to try for the PCOS. However after she looked at my symptoms, she said that I most likely have Endometriosis and that it seems like it has spread to my bladder and intestines. A week after that, I called her to ask what else we can do because my symptoms are not getting better and getting in the way of my day. So after speaking with her, we decided that it would be best to have a laproscopic surgery done. Please pray that this surgery gets approved and that it can be done on 12/16/16. We are hoping to be able to see just how bad it is, how much damage is done so we can determine further treatment, and be able to take out any scar tissue that we can so that it would take away some of my daily pain. Going through all of this recently has put me through a whirlwind of emotions and bringing back memories from all of my hospital and wheelchair days. I am happy to say that I have an incredible support system to help me through all of this and that I am looking at this time as a blessing. Having some sort of answer is always a good answer. All of this is in the hands of God, and I am happy to see where he takes me on this new part of my story.
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Update 12
Posted by Renee Sheffner
23 months ago
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Marykay Stimpfl - thank you comments and I would be more than happy to help with any questions you may have. My e-mail is renee.cherise at hot mail.
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Update 11
Posted by Renee Sheffner
32 months ago
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As you may know, we conducted autonomic and other tests at the Mayo clinic, and they diagnosed Cherise, my daughter with dysautonomia and a genetic disorder. The additional tests can be done here in California, which we are still in progress of with the genetic, cardio, respiratory, and GI doctors, however we were left with an outstanding balance. My friends are doing a garage sale this Saturday, June 21, 2014 from 7 am - 3 pm in Westiminister off GoldenWest and Natal for the balance. Please stop by. They have a lot of great stuff. Thank you for your support.
Renee
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Update 10
Posted by Renee Sheffner
38 months ago
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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

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Marykay Stimpfl
23 months ago

I would love to contact you and receive some information about the mayo clinic. My mother suffers from dysautonomia and we are very concerned. Any chance you would be available for this?

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Lisa Scharlin Elliott
40 months ago

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.

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Valerie Carlson
44 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

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$12,881 of $17.4k goal

Raised by 137 people in 44 months
Created June 26, 2013
$100
Dawn Gonzales
6 months ago

I had no idea Renee. Praying for you and your family. Xo.

LB
$100
Lisa Boyd
15 months ago
SS
$50
Suzie Smith
23 months ago
CB
$100
Cheryl Beerling
23 months ago
GB
$50
Guy and Colleen Baker
32 months ago

Blessings and prayers for you both. We know this is so very hard.

$25
Anonymous
38 months ago
$10
Anonymous
40 months ago
KG
$100
kent garland
40 months ago
MJ
$200
Mike Jubb
40 months ago

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

JS
$300
Jerry Shuck
40 months ago
Marykay Stimpfl
23 months ago

I would love to contact you and receive some information about the mayo clinic. My mother suffers from dysautonomia and we are very concerned. Any chance you would be available for this?

+ Read More
Lisa Scharlin Elliott
40 months ago

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.

+ Read More
Valerie Carlson
44 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

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