I've written only two press releases in my life, both in the past 4 months, both covering a set of pediatric autoimmune disorders called PANDAS & PANS.
Only one of those press releases -- this one -- brought me to my knees.
FOR IMMEDIATE RELEASE
CHICAGO, ILLINOIS – January 5, 2017 -- The national non-profit organization Pandas/Pans Advocacy & Support dedicates its 2017 Winter Grant Session in honor of Max Aaron Wallace of Benton, Arkansas. The 13-year-old took his own life on December 24, 2016, while suffering from an infection-triggered autoimmune disorder attacking the brain. Max’s condition, commonly known as PANDAS or PANS (depending on its infectious source), is treatable.
Max’s mother, Becky Pate Wallace, says her family struggled for years to get Max the proper diagnosis and treatment. He was scheduled to receive his first round of IVIG (intravenous immunoglobulin) therapy this month. IVIG is a complex blood product created from the serum of 1,000 to 15,000 human donors, used to “reset” the immune system in patients with antibody deficiencies.
“I want everyone to know we lack providers," says Max’s mom, a health care provider. "We lack awareness, and we lack cooperation from our pediatricians. I want families to know we can no longer take ‘no’ for an answer from our doctors.”
PANDAS/PANS Advocacy & Support (www.pas.care) supports families burdened by these often-overlooked disorders. Funds awarded during its 2017 Winter Grant Session will be given in honor of Max Wallace and will go to families struggling with the accompanying medical, educational, social-emotional, and financial hardships of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome).
From Wendy Nawara, President and Executive Director of PANDAS/PANS Advocacy & Support: “Our hearts go out to the Wallace family at this time. Most tragic is that this happened at all. The earlier a child is diagnosed and granted access to proper treatment, the greater the chance for recovery. It is unacceptable when a child’s symptoms deteriorate to the point he can’t go on living. This is preventable when doctors recognize and treat symptoms early, and families get the care they need.”
Donations in any amount may be made to PANDAS/PANS Advocacy & Support http://www.pas.care/donate.html
PANDAS/PANS Advocacy and Support is a non profit organization focused on increasing awareness and acceptance of Pediatric Autoimmune Neuropsychiatric Disorders and providing much needed support to families struggling with the medical, educational, social-emotional, and financial hardships of these disorders.
- www.pas.care -- PANDAS/PANS Advocacy & Support
- www.pandasppn.org -- PANDAS Physicians’ Network
- www.nepans.org -- New England PANS PANDAS Association
- www.pandasnetwork.org -- PANDASNetwork
Resources and Links
- Stats: http://www.pandasnetwork.org/understanding-pandaspans/statistics/
- Support: https://www.facebook.com/PAScares/?fref=ts
- Advocacy: http://www.pas.care
- Research: http://latitudes.org/research-pandas-pans/#sthash.p5Az9dqg.qjtu
- Controversy: http://www.pandasnetwork.org/understanding-pandaspans/ending-the-controversy/
- Action: https://www.pandasppn.org/therapeutic-options-for-pandas-and-pans/
- Documentary: http://www.mykidisnotcrazy.com
PANDAS | PANS Advocacy & Support honors 13-year-old Max Wallace, who lost battle with infection-triggered autoimmune brain disorder #pandas #pandaspans #childhoodmentalillness #mentalhealth #notblackandwhite #pandaspansadvocacysupport
NIMH reports at least 1 of 200 kids has PANS (Pediatric Acute-Onset Neurological Syndrome) or PANDAS (Pediatric Neuropsychiatric Disorder Associated with Strep) #pandas #pandaspans #childhoodmentalillness #mentalhealth #notblackandwhite #pandaspansadvocacysupport
NIMH reports that 20% of mental disorders in children may be caused by PANS/PANDAS #pandas #pandaspans #childhoodmentalillness #mentalhealth #notblackandwhite #pandaspansadvocacysupport
PANDAS | PANS: Too many children suffer too long w/out proper diagnosis & treatment. We need doctors. #pandas #pandaspans #childhoodmentalillness #mentalhealth #notblackandwhite #pandaspansadvocacysupport
PANDAS | PANS: Too many children suffer too long w/out proper diagnosis & treatment. #pandas #pandaspans #childhoodmentalillness #mentalhealth #notblackandwhite #pandaspansadvocacysupport
And these are the quotes I gathered that would not fit into the press release itself:
"There was no warning,” Max’s mom says. “There were no signs. It was a typical afternoon. He had been having flares. He was agitated. He was sent to his room. Nothing out of the ordinary. We went to have him get ready to go to a family gathering for Christmas,” she explained. “It was too late.”
"This is every PANDAS/PANS parent's worst nightmare," says filmmaker Tim Sorel, whose documentary My Kid Is Not Crazy chronicles the agony of families fighting for acceptance and treatment for their children's conditions. The film is slated for a 2017 release.
“Max represents all of our kids,” says Gabriella True, Board President of the New England Pans/Pandas Association. “When this disease is treated swiftly and appropriately, there is less chance that the child’s medical condition deteriorates to such a profound degree and symptoms of severe OCD, depression, impulse control, and anxiety become devastating. This is not something that happens at initial onset. While there is a set of diagnostic criteria, every child can present differently; it is not a cookie cutter diagnosis. Doctors need to recognize the signs much earlier. We need better understanding, even among ourselves as parents, of the spectrum our children fall within. Unfortunately, Max’s story is not an isolated one. Too many parents worry their child will suffer the same way Max did.”
“We should NOT have to travel the world and spend every penny that we earn just to get someone to treat our children,” Max’s mom wrote online this week. “We have lost this fight. The gloves are going ON.”
Tags: acute onset, Arkansas, autoimmune, awareness, Becky Pate Wallace, Christine Wolf, Christmas Eve, donate, grant, IVIG, Max Wallace, My Kid Is Not Crazy, neuropsychiatric, New England Pans Pandas Association, PANDAS, Pandas Network, Pandas Pans Advocacy & Support, Pandas Physicians' Network, PANS, PAS, pediatric, suicide, syndrome, Tim Sorel, Wendy Nawara