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Fighting for Claudia

$1,680 of $15,000 goal

Raised by 39 people in 5 months
Created July 30, 2018
Helene Serafine
on behalf of Lauren Chateauneuf
My dear niece, Lauren Kunz Chateauneuf, has been living a parental nightmare. Her daughter (my great niece), Claudia Chateauneuf, is an amazingly strong, sweet, beautiful, and funny 7 year old girl who has been forced to fight harder than any child should ever have to against a disorder called PANDAS. She also has a diagnosis of Autism, anxiety and trauma.

 
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. PANDAS is a result of a misdirected immune system response. The body's immune system attacks the basal ganglia area of the brain instead of the Strep bacteria. This attack results in brain inflammation that effects a child's movements, learning, and emotions. The symptoms can include: Severe OCD, verbal and motor tics (similar to Tourette's), anxiety, ADHD, rage/behavior, regression, anorexia, sleep disturbances, memory issues, developmental regression, fine & gross motor difficulties, sensory issues, depression, deterioration in school performance.  This disorder is frequently misdiagnosed or not diagnosed at all.


It's been over a year since Claudia’s journey with PANDAS began. She got sick and overnight began to change from a sweet little girl to someone with severe motor tics, OCD, intrusive thoughts, severe separation anxiety from her mother, irrational fears, refusal to eat most foods, panic attacks, fear of sleeping alone, urinary incontinence, uncontrollable anger are just some of her symptoms.  This rare disorder causes Claudia’s immune system to respond to illnesses by sending off antibodies, which typically attack the illness; however, we believe that in Claudia’s case it attacks her brain, which results in all of the above symptoms as well as many others. She desperately needs healing so she can live the life of a normal 7-year-old kid again.  We need answers to get her help!


Claudia’s journey with PANDAS has been long, heartbreaking, & complicated. For the past year, Claudia has been on and off antibiotics during periods of time which are called flares. She’s had short periods of time where she seems well but then contracts an illness and the symptoms come right back. She fatigues very easily and can not tolerate most tasks for long periods of time.
 

Claudia’s specialist in her home town is urging her to see a very specialized Doctor to help her. Currently in Rochester, NY there are no doctors that specialize in this condition. Her doctor is also urging that very detailed testing be done to further determine the root of the cause. Sadly, none of these treatments and testing are covered by medical insurance. She needs to see a very specific neurological immunologist in NYC. None of the traveling or blood tests will be covered, in addition to any prescribed treatments. Claudia must be driven due to her severe anxiety and fear of flying. There will be multiple visits necessary to drive to NYC with great hotel and travel expenses.


Sadly, Lauren does not have any support from her ex-husband, Claudia’s father in regards to helping Claudia both medically or financially with respect to her diagnosis and many other issues. He just recently had to be court ordered to sign the consent form for Claudia to just be seen by the specialist, which took many, many months to happen from start to finish with attorneys and the court. The monies that she and her family have had to spend on this alone, have been exhausting. We now have a short window of time to raise these funds as her first apt in NYC is fast approaching.


My heart breaks to watch Lauren, her daughter Claudia and their family, go through this tough journey. Both of her daughters have different degrees of special needs and as a single mother she works tirelessly to give her children all the love and care they require. Many of you know Lauren and what a selfless person she is. She’s always helping others, has donated to many causes and is an avid animal rescuer. I know that she and her family will never ever ask for help so I am asking for them. Please, donate what you can.  Together we can help raise enough money to help this sweet, loving, funny, beautiful girl get the medical treatment and testing she so very much needs from this horrible disorder.

 
Thank you for your support for Claudia.


(There is a strong parental movement to bring awareness & recognition to this disorder. PANDAS/PANS has a national awareness day of Oct. 9th & there is a documentary out by Tim Sorel entitled "My Kid Is Not Crazy- A Search For Hope In the Face of Misdiagnosis". This documentary follows 6 families journey with PANDAS. This was filmed over a 3-year time frame. Please click on the link at the bottom to watch the film's trailer & to learn more about this powerful film.)

 
https://mykidisnotcrazy.com
 

  http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/
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Update 2
Posted by Lauren Chateauneuf
4 months ago
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Claudia's date to see Dr Frid in NYC is now scheduled for October 9th, which is fast approaching! Unfortunately we had to cancel her apt on 8/20 because we didn't raise the funds required and were also up against some very unfortunate circumstances. We have a long way to go to raise the funds and are so very grateful to those that have donated.

If you cannot donate please consider helping us with our upcoming fundraiser. The venue and date is to be announced very soon! We're looking for donations from local businesses that we can raffle off to raise money for Claudia's medical care. If you know someone who owns a business please help us by asking them to donate a gift card or item!
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Update 1
Posted by Helene Serafine
5 months ago
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A special Thank You to all that have donated & shared this fundraiser. It is truly appreciated! Please continue to share and and help us meet our goal so Claudia can get the medical care she needs.
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$1,680 of $15,000 goal

Raised by 39 people in 5 months
Created July 30, 2018
Helene Serafine
on behalf of Lauren Chateauneuf
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