Help Matthew N. beat PANDAS

My best friends, Oleg and Ilyana Novofastovsky, have been living a parental nightmare. Their son, Matthew Novofastovsky, is an amazingly strong, sweet, handsome, and funny 7 year old boy who has been forced to fight harder than any child should ever have to against a disorder called PANDAS. 

 
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: 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 almost 1.5 years since Matthew’s journey with PANDAS began. He got sick and overnight began to change from a sweet little boy to someone unrecognizable with motor and verbal tics, OCD, intrusive thoughts, severe separation anxiety, and uncontrollable anger are just some of his symptoms.  This rare disorder causes Matthew’s immune system to respond to illnesses by sending off antibodies, which typically attack the illness; however, in Matthew’s case it attacks his brain, which results in all of the above symptoms as well as many others. He desperately needs healing so he can live the life of a normal 7-year-old kid again. 

 

Matthew’s journey with PANDAS has been long, heartbreaking, & complicated. For the past year and a half, Matthew has been on and off antibiotics and steroids with little to no improvement. In November, he had his tonsils removed. After seeing a specialist in Washington DC, she has advised for Matthew to move forward with the next step toward healing – Rituximab treatment. This is a rigorous treatment that will work to replace and renew Matthew’s immune system. The hope is that Rituximab will remove the harmful antibodies in his immune system and that he will return to being a regular kid again.

 

Matthew’s doctor appointments with the PANDAS specialist are not covered by insurance. His doctor advises for him to have Rituximab treatment as soon as possible in order for his immune system to be stronger. The treatment cost for his age and weight is $23,000. His parents have been paying $500 per visit, phone call, or email with the specialist. They travel to Washington DC for Matthew to be able to see one of the best specialists in the country to help cure their little boy. The medical bills are beginning to add up with no end in sight. He is considered a very severe case and his brain inflammation is only getting worse. PANDAS has caused him to have involuntary verbal and motor tics. The cost of the treatment is entirely out of pocket and we have a short window to raise these funds.

 

My heart breaks to watch my best friends, Oleg, Ilyana and their family, go through this tough journey. I know that they 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, handsome boy get the treatment he needs from this horrible disorder.

 

 Thank you for your support for Matthew.

 

 

(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/