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.
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!
Renee and Cherise
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!
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 Â½ 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.
"¢ 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.
Full day at Mayo: 7:30 am to 6:30 pm with tests and appts. Dr diagnosed her with Ehlers Danlos Syndrome and dysautonomia and the lung dr said her respiratory issues and vocal cord dysfunction is not common with dysautonomia. further tests required. They also want her back for a 3 weeks treatment program. We see cardio and more tests tomorrow. Thank u for your prayers.
Completed today's Dr. appointments and tests at the Mayo Clinic. They added more tests after further consultation, including recommendations for tests that can be done in California. We will not be doing any tests that can be done at home. We start early again tomorrow. We are so excited to finally be getting answers and a treatment plan. Thank you for your prayers and support. Love Renee and Cherise
We made it! We are in Minneapolis next to Mall of America. The oxygen made a world of difference and having Raquel with us to help. The plane was 100 % full and Raquel still got on going stand by and had a seat right next to Cherise and I. God is good!
Finishing up preparing for the trip to the Mayo Clinic. We leave Orange County at 8:30 am, Saturday. Cherise cannot exert herself and is resting now. Please keep us in your prayers for safe travel and a quick diagnosis and treatment plan without too much testing and cost. There has been a lot of good works by so many people to help brings us thus far. We couldn't have done it without everyone's help! It's been a journey indescribable and we can't thank you enough. The cards we received with words of encouragement and support really helped her through these lasts few weeks being bedridden and adjusting to a wheelchair. What ever the outcome is, coming home to well wishes will help.
PO Box: 19051 Goldenwest #106-120,
Huntington Beach, CA 92648.
I will try to keep you updated when I have computer access. May God bless you all!
With all our love, Renee & Cherise
Please please pray..she is having breathing and blood pressure issues and she doesn't want to go the hospital but I feel she needs to. Right now she can't make it to the restrooms in a wheelchair without issues. Also pray we get approval for the Angel flight...as we need her to travel safe in 8 days. Thank you so much for your support!!!
Cherise is back in ICU at Fountain Valley Hospital. She just couldn't recover from the fund raisers last weekend! She over did it. We tried nursing her back to health, by bed rest and breathing treatments. But any time she stood up she had respiratory issues including stridors. They had to re-open up ICU as they just closed it earlier due to no patients. So she is their only ICU patient. The nurses and doctors remember her from her June stay, so it's like a reunion. Plus how can you forget Cherise, she is as unique as her red hair, her sweet disposition and her disorder of dysautonomia. This time around the doctors are more open and admit that she is the only patient they have seen with dysautonomia. They're just treating her symptoms and we hope to have her home soon once she can walk at least 10 feet without issues. FV hospital has a great team!
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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