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.
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.