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.

American Ninja Warrior

Did you guys see American Ninja Warrior? Michael Stranger's wife said she has Ehlers Danlos Syndrome and that for her it is a terminal illness. She has received a ton of backlash within the EDS community because she called it terminal which to many people means that a person is believed to have six months or less of life to live. This is a quote (by permission) about this topic from an EDS support group but warning that it is (at least to me) very intense:

"In just the last week, we've lost five of our zebras from our support groups here on Facebook. They have died from EDS or EDS related comorbidities. There is a common misconception that you have to have the vascular type to die from EDS and that's simply not true. Anyone who tells you EDS can't kill you is either misinformed or is afraid of their own mortality. That doesn't mean it's a death sentence for every person, but we have to be realistic. 80% of our bodies are made up of collagen and zebras have defective collagen. That means 80% of our body parts have the potential to fail on us in some way, which could potentially lead to our death if it goes undetected or untreated. And many of our comorbidities cause other systems to fail in this sort of cascading effect that doctors find hard to diagnose and deal with. In other words, one thing goes wrong, and then it's like dominoes. That can result in disability or death fairly quickly, which is what happened in Barbie's case this week.
So the short answer is, "terminal" is probably the wrong word to use. "Fatal" or "morbid" might have been better, I don't know. I'm not up on the proper terminology. The point they were trying to get across is the seriousness of the disease and I'm very, very glad they did because the seriousness is what's going to bring more awareness for us, which is desperately lacking. Five zebras died suddenly this week. Those are just the ones we know of. They were young and vibrant and better treatment might have saved them."

~By Lael Youngblood Tallini

As always please subscribe and share!
We are desperate for attention on awareness for research and to get questions finally answered.
You can also help by donating to the nonprofits above or the families found on the right side of the blog page.
Thank you for your support!!