Please help my best friend, Jeanine Chamberlain, get her daughter (my goddaughter) Charli the medical care that she needs. Charli is 11 yrs old (almost 12) and has been sick on and off since she was a little girl. She started with seizures caused by high fevers as an infant, has had 10 broken bones in 11 yrs, and most recently has had to battle mono & meningitis as well as high fevers that last for several days. Finally, her doctor recommended that she be seen at  Children’s Hospital of Philadelphia (CHOPT). 

In order to make this happen, Jeanine has had to end her seasonal job as a personal trainer/yoga instructor a week early so that she could travel with both of her children to Philadelphia to get the diagnostic tests that Charli needed.

What they discovered is listed further below.

What is not listed is:

1.  Although she was told before she made travel arrangements that her insurance would cover some of her tests, she found out that her insurance does not cover any out of state diagnostics or treatments.

2.  She will more than likely need to make the trip from FL to Philly at least one or two more times. These trips will be just like this most recent one, with Charli & Riley (her 10 yr old on the autism spectrum), last minute travel with an intense schedule of doctor visits.

3. She is a struggling single mother, who finally at the age of 40, purchased her first home to provide stability for her two children and she  is terrified that she might lose it all just to be able to get Charli the medical care that she needs.

Charli status update from Jeanine:

Wanted to give you an update on my daughter Charli. I do not have a full picture yet but have a better understanding of what is going on. I received news a couple of days ago that no parent wants to hear however knowing is half the battle. What Charli has does not have a cure. the only treatment is to manage her symptoms, make her more comfortable. We are still waiting for some more bloodwork to come back, it could take up to another week and a half to hear about the other results.
What seems to be going on, at least part of it is, she has autonomic dysfunction or dysautonomia. This is a condition of the automatic nervous system. It does not work correctly. This effects the functioning of the heart, kidneys, bladder, intestines, sweat glands, pupils, blood vessels, etc. The body cannot regulate its own body temperature, heart rate, digestion and breathing rate. It affects the parasympathetic and sympathetic nervous system together. I was told that it can range from mild to life-threatening and Charli is roughly a seven out of 10 in severity. This is not rare, there are over 50,000 people that have a symptom or two relating to this however, Charli runs the whole gamut of symptoms and is quite a bit more severe. Charli‘s inability to fight infection and weakened immunity also poses a bit of a problem in that her body’s response to infection is not normal. Something as common as pneumonia can be life-threatening. Some of the symptoms are temporary and reversible others are chronic, long-term and could become more severe overtime.
There are primary causes and secondary causes for getting this and it is still unknown how this happened. We are waiting for the blood come back to see if it is coming from a form of cancer or some other disorder. Diseases like MS, lupus, and myasthenia gravis, can result in what Charli has. So all of these horrible diseases lead to the body breaking down and having what my 11-year-old daughter has.
They told me the prognosis is not wonderful. Charli is young and the younger she is, the better the prognosis. If she were in her 40s and diagnosed they would give her 5 to 10 years to live.
A lot to swallow as I just was given this information not even two days ago. We are still waiting for the bigger picture to see if there are any cancers or any blood cell issues going on as well to paint a more clearer picture.
I do know that we have to come back to Philly in the next three weeks to meet with the head of the hospital again. Because of her severity, he wants to see her face to face one to two more times. He did say we can then set up the management we need to in Florida. He said many things. She has to eat very healthy she has to Honor her body with rest often. She has to lead as close to a stress free life as possible. He said at some point,she might have to leave school to do virtual school from home so that she eliminates all the outside stressors like getting up from restful sleep and grade school drama. He wants her to stay as active as possible outdoors but when she is tired she will need to rest.
Because of the dysfunction and the way that it effects her muscles and joints, fatiguing them, it is effecting the growth plates of her ankles and causes her pain. He did tell me that I will have to buy what’s called an adaptive stroller which will be better than a wheelchair for her but it something that I have to get for her as soon as possible because I know that she’s already having problems walking on certain days and gets fatigued so often. Trying to be as positive as I can be about all of this but feel like I’ve been hit in the gut.
We are going to be back in Florida on Tuesday night and at that time I’m going to have to start thinking about a few things, getting her supplements that he wants her on immediately, getting back to Philadelphia, finding this adaptive stroller, and just reading as much as I can about all of this to try to help her in anyway possible.
The head of the hospital told me that his team will be giving me a call with blood results and is soon as they do I’m to call his office and we will review together. That’s all expected to be done in the next week or two and then he wants to see her face-to-face once all the results are in so we can set a plan of action in place for her.
Just wanted to give you all an update as I know that many of you have been following what has been going on. Again trying to wrap my head around all of this and staying as strong as I can for her

Jeanine Chamberlain



Any help is appreciated. If you would like to reach out to Jeanine directly you can do so at: 
Charli’s Care
725 SW College Park road
Port St Lucie, FL 34953

Most importantly, please share Charli’s story.

Thank you,
Melissa