Ryleigh Jones story

Campaign Created by: Jennifer Jones

The funds from this campaign will be received by Jennifer Jones.

This campaign will be critical to Ryleigh's successful healing. Ryleigh has a slew of upcoming tests to determine which cells are being affected. What she can and can't eat. and how much damage the spike protein has done to her body. Please consider helping us pay for the upcoming treatments from the functional medicine Dr. They want Ryleigh to do weekly IV infusions with Vitamin C and potentially other vitamins as well. In addition to the patterson  test, which is $1000. Please, if you can't contribute, please share. 

March 23rd, 2022 Ryleigh lost feeling and ability to walk. With the diet change she has begun to walk again but the limbs have no sensation. Ryleigh no longer feels when she urinates. She is 8 years old. this is a tragedy to her Mom and Dad. 

Between the 15th of February and April 20,2022 Ryleigh has been admitted to VCU Health system 11 times and they have been unable to diagnose her properly. They say that Ryleigh has a disorder called Functional Neurological Disorder. We do not believe this to be true as she is only 8 years old and this diagnose would be unheard of at this age. 

Ryleigh has been through extensive medical procedures such as EEG, MRI and a lumbar puncture which have all come back clear.

We still have no diagnosis for our beautiful loving girl. If you’ve known Ryleigh you know that she’s loved life, school, friends, baseball, and dance.

Ryleigh has suffered significant memory loss to the extent some times she doesn’t remember her dad and I or her family and beloved dog Buddy. 

Ryleigh had the COVID Vaccine January 6, 2022 and was diagnosed with COVID on January 12th. During COVID she had a straight 48 hour fever and lethargy.

My heart tells me that she has developed something from the COVID vaccine or disease itself. The VCU medical community will not dig further into our hypothesis.

On March 24th, we took Ryleigh to Johns Hopkins Hospital where we were quickly shut down because they pulled our record from VCU Health System, so they were unable to truly do an extensive workup on Ryleigh. JHH was not much help to us other than running tests that suggest Ryleigh may have Porphyria and Celiac disease. 

To date I have bills upwards of 11,000$ plus we have medications/vitamins that we must pay for to help Ryleigh recover.  Ryleigh currently has a functional medicine doctor. We are giving it a try as we have been ridiculed by VCU and now have PTSD to even walk into a hospital. We never knew Doctors and Nurses could be so cruel. 

On 4/22/2022 I had Child Protective Services show up at my door accusing me of not treating Ryleigh or giving her un-prescribed medications. The hospitals won't give her medications. How could I possibly give her something I don't have? This is the lowest of the low that I have seen from VCU.  To disagree with some of the other doctors opinions that we have received is one thing, but it's another to be unethical and throw other licensed medical professionals names in the trashcan. The chief pediatric hospitalist at VCU Medical center deliberately googled our Dr. From New York and found that he had an incident with his taxes and told me about it to discredit his work.  She then decided to call CPS on us because I didn't agree with her diagnosis of FND. She lied to the CPS worker by stating that I said I was giving her un-prescribed medication.  The government should not be able to intervene in a parent-child medical decision making process. Doctor's have opinions. It's up to the parent to make the best choice for their child.  To have the additional burden of CPS on my shoulders it makes it even further distressing to use the medical system.  It's a very sad situation, but we will continue to fight to find the appropriate care for our daughter to receive the medications that will assist to remove the spike protein from her body. We have started working with a functional and integrative medicine doctor. 

As of 4/25/2022 - Ryleigh has improved slightly because we made significant changes to her diet. Gluten Free foods and plant based organic foods is all that Ryleigh is able to eat as of now. As you can imagine for an 8 year old this has been significantly challenging. 

We have several upcoming outpatient appointments coming up to further determine what damage has been done to our loving little girl. 

Ryleigh's blood work has not been explained to us and there are no explanations for the reasons that her SED rate and CRP and other tests are elevated. 

VCU has been rude and disrespectful to us. We have been laughed at and told we are crazy for believing our daughter. Ryleigh's life has changed dramatically and she's too talented to let her suffer in this agony without fighting with everything we have to get the proper treatment for our girl. 

Article about CPS being called

Please consider helping us figure out what is happening with our child. We have accumulated over $13,000 in medical bills and her treatment is ongoing and we may also have to have an attorney in the future. 

Thank you and hug your child tight because tomorrow may not be the same.


Recovery Update
May 27, 2022
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Ryleigh is recovering. We have seen major improvement since she began IVIg. I know it’s not a recommended treatment but it’s working. Ryleigh had an autoimmune response to the vaccine and it caused her massive symptoms. We went through hell for months with the issues. It was incredibly scary at times, and heartbreaking to watch your child suffer and know there was nothing you could do to solve it. We have been 30 days without a blackout or faint. We attribute that to the change of diet and the multiple vitamins that we were blessed with, thanks to our donations. The sensation for urine and legs returned minimally after IVIg began. We have spent thousands of dollars on hospital systems that proved to be ineffective in treatment. We were ridiculed and even had CPS called on us for fighting for our child. We persevered through it all. Fought like hell. We were surrounded by other parents whose kids are just like ours who supported us. We realized who our real friends were and those that weren’t really friends. Ryleigh has a way to go but I can’t help but be thrilled at the progress she has made. It is because of you all that we were able to keep the fight alive and persevere through the trials daily. I can’t measure the blessings that we have received through prayer and financial blessings that keep Ryleigh fully able to eat all gluten, non-GMO, and organic. We had to change our entire food lifestyle. Thank you all. 

Update #2
May 12, 2022
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Hello - I want to give an update.  Right now, Ryleigh has stabilized for the most part. She did go to the ER on 5/5/22 with sharp shooting chest pains and shortness of breath. They confirmed that, yet again, she has pneumonia. This time she was given Omnicef which is a broad spectrum antibiotic. She appears to be doing better and the Shortness of breath and chest pain has resolved. 

We still have no feeling in legs, unable to feel when urinating, cognitive decline, and memory loss  

5/11/22 - We are receiving bills daily from the past 2 months in hospitals. Ryleigh has received her treatment medications in the mail. She is doing well with her new eating and eating schedule. She can only eat 8 hours a day and must fast the remainder. 

In case you didn’t know, once removed GMO and gluten from her diet her symptoms started to stabilize. I’m proud to say we haven’t had a psychosis episode since April 28th. We believe that God is healing our baby and putting people in our corner that have been great help to us. 

We still need your help. Please share with everyone you know. The money donated previously was used to get the diagnosis and for travel to BSB and NYC.

Currently, Ryan and I have received over 14,000$ in medical bills

What does your donation does for Ryleigh?
May 9, 2022
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Donations received from the go-fund-me were used in the initial diagnosis stage. Ryleigh was in Johns Hopkins for six days. After that we were in NY for 3 days for an appt to help diagnose her and give us the ability to get the IVIG treatment. We are forever grateful for those supporters. 

Ryleigh's vitamins and minerals cost $350/Month that is subject to change should Ryleigh need additional medicine.

Celiac Disease - Gluten-Free, Non-Gmo, Organic only diet - Cost for her alone I would estimate that to be about $600/month. (have you been to the store yet?)

CBT Therapy/Therapy - Non Insurance - $65/week

Medical Bills estimated at this time to be $13,000. Over the last three months, Ryleigh has had 13 hospital visits. 5+ Doctor visits with specialists/Functional medicine Doctors. 

Upcoming potential admit to Shelby Ryan Ability Institute (unknown costs at this time). - They treat the whole body. This process has been looked at since March 25th, 2022. If accepted, we will need to travel to Chicago, IL for Ryleigh's admission. 

I want to let me supporters, and followers know that every donation matters. What I have learned is that little amounts add up to amounts that help pay for these large costs. 

We want to thank all of you who have donated from the bottom of our hearts.

Love, Ryan and Jennifer

You can’t make this stuff up
May 6, 2022
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On 4/14/22

we presented with pneumonia on two x-rays. Dr. Said he didn’t believe it and sent us home. 

4/18/22 - same presentation. X-ray #3 ran. Finally they agreed to the X-ray and reluctantly prescribed amoxicillin. 

5/5/22 - guess who has pneumonia yet again? Ryleigh. This time treating with broad spectrum antibiotics cephdinir. 

Go Fund Me Shut down because they are part of the censoring problem in this country
May 4, 2022
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Mainstream media is trying to shut Ryleigh's voice down. I want you to know that we will not be quiet. Getting Ryleigh's story out is upmost important to us. 

Ryleigh's story can be found here too: https://www.realnotrare.com/post/ryleigh-jones-8-yrs-old

Update #2
May 4, 2022
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Donation needs
May 2, 2022
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Ryleigh continues to need treatment which is not covered by insurance. She will need to have vitamin infusions three times a week which roughly cost $200 per time. Your donations will help cover these costs. In addition, her medical bills are steadily coming in from various hospitals. 

Thank you for considering donations and sharing. 


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