My Dear Friend

What happened to my friend!?!

I am sure you have all seen by now how much she is struggling. Praying to God and using all her strength to keep it together and raise her family. She cried out for help this last April to no avail.

{My 16 year old daughter, Jenicee, is in need of assistance...We need at least $600, at this time, for her to see Dr. Paolo Bolognese, MD Neurosurgeon. She has been diagnosed with Cerebellar Ectopia=Chiari Malformation but the NS didn't want to put the Chiari dx down because he didn't feel all of her symptoms were related...of course not, they also go along with tethered cord syndrome! (She also has Hypermobile Ehlers Danlos Syndrome with multiple crossovers, gastroparesis, several types of neurocardiogenic dysautonomia, has had several surgeries -including having just had to have her right knee repaired after a fall-her kidneys are not doing well at all, and many more issues that would take a page to list.) I have already sent most of her medical records from JHH, WVU Hospitals, and DC Children's National to Dr. Bolognese to review. He had his nurse call and tell me that he sees several issues on her imaging that he feels need attention. Jenicee's body is quickly and progressively failing. She went from walking "normally" to needing a walker, to now wheel chair in less than 1 year. She also has went from eating mostly normal to NG tube, to PEG Tube, to G-J Tube. Jenicee has Maryland Medicaid and they will not pay out of state...we have appealed to no end...because she has seen this one NS and and a couple of other local NS, even the "Pediatric Section Chief of Neurosurgery" at Johns Hopkins-that don't know their arse from a hole in the ground, we cannot get approval for any reason unless she sees Dr. B and he can show proof that she needs surgical help that only he can provide. Children's Miracle Network said they may be able to help with surgical costs but she has to be an "established patient."}

Their family has been through so much! I can't even go into how much more there is to say. I wont get that personal today. But I understand why nobody helped. They would have to get ahold of her.. somehow. Then get an address from her to do anything. Well, things have changed since then. She now has a paypal account and the email is jonniejo_mcd@hotmail.com 

I am praying with JonnieJo and her family that somebody
who reads this could possibly help them find hope!

You can help JonnieJo and families like hers by clicking along the right side of this blog to learn more about them.