Thank you for taking the time to read the story I am sharing. For those of you that know me, I am all about helping out where and whenever I can.
This holiday season I am asking you to please consider donating to the family of my cousin, Stacie and Peter Manna, as they work against the clock to cure their two precious children from an aggressively devastating disease that is abbreviated as PANDAS. PANDAS is a neurological autoimmune disorder caused by any of the 120 forms of strep bacteria. Once strep triggers this, PANDAS does not leave the body when the infection clears. A PANDAS brain at the basal ganglia (which controls communication and behavior) goes into extreme inflammation when the body has an immune response. This causes the brain to work against the body 24/7. Because this impacts their brains, the symptoms are behavioral and why it is so difficult to find the help-there are no physical signs.
PANDAS is found in google searches as being rare. It is not-it is rarely diagnosed. 1 in 200 children being diagnosed for adhd, anxiety, depression, Tourette's, ocd when the root cause is PANDAS.
Stacie first saw something was not right with 9 year old Collin 3 years ago and fought for answers through many improper diagnoses. She saw the same thing with Autumn 1 1/2 years ago. It was when Collin begged through tears to fix his brain because he didn't want to be angry anymore and Autumn cried to make her brain stop doing things that she took matters into her own hands. After dissecting pages among pages of medical records, endless nights of sleep, Peter and Stacie promised Collin and Autumn they would not stop fighting until they found someone who understood and would help them.
Collin and Autumn need full time care. Stacie is not working and staying at home with them full time while Peter continues to work as a Milwaukee Firefighter.
Research will tell you that having one child with PANDAS causes severe burnout in the parents. Theirs is x 2.
10 doctors later they have found Dr. Kovacevic in Illinois who has accepted Collin and Autumn as patients and is ready to defeat this beast. Dr. Kovacevic is 1 of the 2 that discovered PANDAS over 20 years ago. He has successfully treated 1,400 patients with just one 3 day process of IVIG (blood transfusion of antibodies). The battle is Wisconsin does not recognize the PANDAS disorder so it is not covered by insurance. Because Peter and Stacie have to travel to Illinois for the treatment, even though they have excellent medical insurance, it will not be covered due to the fact it is out of state. The cost is $39,100 up front in order for them to proceed with this procedure, that will cure their children, December 9th.
They will have a 3 day stay. One night in the hospital, one hotel night and return to the hospital on the 3rd day. From their they will be released to go home with medications and follow up visits.
I know this year has financially impacted everyone in so many ways. I am asking you have anything to give to please donate so they can proceed and not have to choose one child over the other to begin treatment. With what they have gone through, given up and lost along the way, they deserve more than anything to get their children back.
If you care to, feel free to share this to your page,
I thank you all from the bottom of our hearts and wish nothing but a safe, healthy and happy holiday season.
Much love to all of you,
- Tim Ingram
- Lorin Boyd
- Ysabel Lopez
- David Sells
Organizer and beneficiary
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