Ask The Nurses Episode 88

Ask The Nurses

Ryleigh Jones was a happy, lively, normal 8-year-old girl until she was injured.
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. 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 diagnosis would be unheard of at this age.
Ryleigh has undergone extensive medical procedures such as EEG, MRI, and a lumbar puncture, all of which have come back clear.
We still have no diagnosis for our beautiful, loving girl. If you’ve known Ryleigh, you know she 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 me or her family and beloved dog Buddy.
Ryleigh was injured on January 6, 2022, and was diagnosed with COVID on January 12th. During COVID she had a straight 48-hour fever and lethargy.
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 could not truly do an extensive workup on Ryleigh. JHH did not help us much other than running tests that suggest Ryleigh may have Porphyria and Celiac disease.
As of 4/25/2022, Ryleigh has improved slightly because we changed her diet significantly. Gluten-Free foods and plant-based organic foods are all that Ryleigh can eat as of now. As you can imagine, for an 8-year-old, this has been significantly challenging.
We have several upcoming outpatient appointments to determine further 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 why her SED rate, CRP, and other tests are elevated.
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 we may also have to have an attorney.
Thank you, and hug your child tight because tomorrow may not be the same.
https://givesendgo.com/ryleigh

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