Help save Danny's life

INTRODUCTION:
There is a rare syndrome called PANDAS, and my son Danny (age 24) has been recently diagnosed with it. 

PANDAS or Pediatric Autoimmune Neuropsychiatrc Disorder Associated with Streptococcus occurs when the Streptococcus bacterium passes the blood brain barrier and results in inflammation of the brain. This has caused Danny to exhibit life-changing symptoms.

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 Danny’s movements, learning, and emotions.  This disorder is frequently misdiagnosed or not diagnosed at all as in Danny’s case (misdiagnosed for 24 years)!

He is in dire need of a treatment that would be life saving for him.  
The treatment is for Rituximab.  
The amount needed  to pay out of pocket for the drug alone is $32,000.00.

DANNY’S STORY:
My son has been ill for approximately 90% of his life.  His
Illnesses have turned into regressions/episodes that sometimes last 4-6 months where he spirals backwards from the swelling in his brain. 

In the past 24 years, Danny has endured:
-hundreds of doctors/specialists visits, tests and procedures
-almost every pharmaceutical and combination thereof (antipsychotics, anticonvulsants, antidepressants, stimulants, SSRI’s, anti-anxiety’s, antibiotics, steroids, etc);
-every autism therapy known to man (early start Denver model (ESDM); TEACCH (Schopler/Reichler); applied behavior analysis (ABA) in the form of verbal behavior (VB) and discrete trial training (DTT); natural environment training (NET); picture exchange communication system (PECS Bondy/Frost); floor-time; son-rise program; miller method; pivotal response training (PRT); positive behavior intervention (PBI); relationship developmental intervention (RDI); Cognitive behavior therapy (CBT);etc;
-biomedical and holistic protocols (diet - gluten free/casein free/ sugar/die free/ yeast free; ketogenic; omega-3; melatonin; essential oils; 
-alternative treatments (chelation therapy, hyperbaric oxygen, secretin, weighted blankets/vests, vitamin therapy (super nu thera), dimethylglycine, CBD, cannabis, auditory training,
-80 hours/week eclectic approach in-home therapy, 
-years of professional services: sensory integration therapy, speech therapy, occupational therapy, physical therapy, cognitive behavioral therapy, music therapy, communication therapy, social skills therapy, feeding therapy, behavioral support, equine therapy; 
-homeschool: In third grade, Danny came home with marks all over his arms - when asked who hurt him and/or why he didn’t have the communication skills to tell me (so I promised him that he would never have to go back to school until he could tell me)- Danny was homeschooled until the age of 21. 
-medical issues: chronic constipation, constant belly pain, gut issues,  
-severe allergies
-debilitating daily migraines
-constant sore throats, ear infections, respiratory infections,
-sleep disorder
-feeding issues
-grand mal seizure age16 
-fractured tailbone age 16
-surgeries: tonsil/adenoid removal, over 25 ear tube surgeries, 
-procedures: mri/eeg/ekg/cat scan/upper/lower gi/blood work
-in constant pain.

Every penny has been spent on therapies, pharmaceuticals, protocols, but Danny didn’t have a fair chance at life because he was misdiagnosed until present at the age of 24.   

I begged the doctors/hospitals/specialists/therapists for 24 years that there was something more than just his autism diagnosis and I pleaded for them to do more testing to look further. Danny is always in constant pain. 

 Each episode puts him further and further at risk. His body is wearing out. 

The last episode he lost nearly 80 pounds and couldn’t sleep beyond 1-2 hours per night.  Every Emergency room I took him to - gave me a different diagnosis and each one told me to institutionalize him.

Danny is now immunodeficient (his immune system is unable to fight off infection and illness).  Not one doctor ever gave me the correct diagnosis of PANDAS or even thought to send me to a doctor that might specialize in PANDAS - in fact - I’ve had every diagnosis under the sun except for the correct one (pandas) until recently.  

HOW DANNY RECEIVED THE CORRECT DIAGNOSIS  AFTER 24 YEARS:
I recently saw a 20/20 Television special on PANDAS and I knew immediately (link below). I scheduled an appointment with Dr. Latimer, Pediatric Neurologist, PANDAS Specialist in Washington DC. Dr. Latimer has devoted her career (over 20 years) to treating PANDAS.

We traveled to Georgetown.  Dr. Latimer examined him, studied his 24 years of records and ran blood tests to confirm that Danny did in fact have PANDAS.  Note: If PANDAS is caught and treated early, most children will be fully healed (treatments: antibiotics, steroids, IVIG (Intravenous Immunoglobulin - high dose of antibodies that help to reset the immune system) or even plasmapheresis (more severe cases of PANDAS)).

Danny was diagnosed on 09/20/18.  

Dr. Latimer states that Rituximab is the only treatment available at this stage in his life (due to).the severity of how far the disease has progressed. (Rituximab is the only treatment available and used for the most severe type of PANDAS.) https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

Danny’s life has been full of pain and heartbreak.
This is Danny’s last option for treatment and hope for life.

24 YEARS OF LIVING WITH UNDIAGNOSED PANDAS:
When Danny has an episode it comes on out of nowhere and they hit so hard and fast it leaves your head spin.  They are alarming (to say the least).  When one hits -it can be best described as a multitude of symptoms:  sleeping for 1-2 hours per night for months on end, refusal to eat (last episode he lost 80+ pounds), dilated pupils, anger/aggression with self harm, short term memory loss, extreme OCD (no lights, no talking, no toilet paper, no shampoo, all doors must be locked, repetitive actions, just a few I’ve named), tics, jerky movements, loss of motor skills, rituals, anxiety and fears, vocal/verbal stimming, high blood pressure, pacing, hyper sensitive to clothing, etc.  Danny needs 24/7 at arms length specifically trained supervision at all times during these episodes.

It’s terrifying as a parent to see this happening to him.
These episodes are draining and horribly devastating.

Watching your son deteriorate physically, mentally, emotionally, cognitively to the point of having zero quality of life is hard to put into words.

Danny’s life depends on getting Rituximab.

Many children have recovered from PANDAS & the brain can be healed.  Even though it has been 20 plus years since PANDAS was discovered, many insurances consider treatments experimental and will not cover them. Unfortunately, our insurance (Keystone Mercy) does not cover Rituximab.  Due to the insurance not covering, you have to pay for treatment up front by private pay. 

At this point, I am asking for your support and donations for the Rituximab. Dr. Latimer believes this treatment of Rituximab will give Danny not only his life, but his quality of life back 

Once it is paid for - Dr. Latimer noted that Rituximab can be scheduled asap.   


REQUEST/ FUNDING NEEDED:
I am asking for funding for Rituximab.
The treatment is for 2 courses of IV Rituximab.  
The cost for each course is $16,000.00.  The amount needed  to pay out of pocket is $32,000.00 for the drug alone.

Any amount that you can contribute would be most appreciated The Rituximab Treatment is NOT covered by health insurance and entirely out of pocket.

If you can't contribute please share on social media,  say a prayer,  send good vibes or positive thoughts  for Danny to be healed. 

The doctor appointments with the PANDAS specialist are not covered by insurance. His doctor advises for him to have Rituximab treatment as soon as possible. The treatment cost for his age and weight is $32,000.00. I have been paying $500 per visit for the specialist and the cost of travel to/from Washington DC to see the only doctor that will treat/cure my son.  The medical bills have been adding up. He is considered a very severe case and his brain inflammation is only getting worse. The cost of the treatment is entirely out of pocket.  

Danny’s doctor  wants him to have Rituximab as soon as possible 
and I only have a short window to raise the funds.
 
SUMMARY/CONCLUSION:
Danny’s journey has been long, heartbreaking, & complicated. For the past 24 years Danny has been on and off antibiotics and steroids with little to no improvement. 

With your help, Danny can move forward with the next step toward healing – Rituximab treatment. This is a rigorous treatment that will work to replace and renew Danny’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 functional human being with dignity and gain his life back that he was never given!!!!


The past 24 years have been living a parental nightmare.

Danny has been forced to fight harder than any person should ever have to being misdiagnosed for 24 years!!!!!!!

He deserves a chance at life.He deserves basic human dignity - quality of life.


This disease is very intense, and is a lot to navigate and research. I (will update on Danny’s condition when there are changes

It is important to also raise awareness as many children with this disease are misdiagnosed as my son has been for 24 years. 

Some links have been provided below that will below that will help explain what Danny is going through.

Please continue to pray for Danny’s health & healing & for our family. Thank you again for donating for Danny's treatment! 


IN CONCLUSION:
This rare disorder causes Danny’s immune system to respond to illnesses by sending off antibodies, which typically attack the illness; however, in Danny’s case it attacks his brain, which results in all of the above symptoms as well as many others. He desperately needs RITUXIMAB - so he can begin to heal and live his life - and not be told to institutionalize him ever again!

All our love,
Danny and Mom (Suzanne O’Mullan)


Links:
There is a documentary that tells the story of 6 families & their journey with PANDAS.  You can watch the movie on Vimeo on Demand for $3.99 or buy the movie from the website. It is very powerful & I think it will help lead the way to more money for research & to open the eyes of medical professionals who are not familiar with or deny the existence of the disorder. The film won the best film award from the Broadcast Education Association out of 1,453 other films that were submitted. Again, the name of the movie is "My Kid Is Not Crazy- Search for Hope in the Face of Misdiagnosis " & the website is :

http://www.mykidisnotcrazy.com/

My Kid is Not Crazy documentary trailer

https://vimeo.com/159385789

http://www.pandasnetwork.org/

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

PANDAS Network Diana Pohlman, Executive Director and Treasurer
655 Oak Grove Avenue #1373
Menlo Park, CA 94026
https://www.pandasppn.org/

20/20 episode about PANDAS:
https://abc.go.com/shows/2020/episode-guide/2018-07/20-072018-pandas

Treatment Rituximab:
https://www.rituxanhycela.com/patient/fl/what-is-follicular-lymphoma/signs-and-symptoms.html

Completed Research and Important Articles.

http://www.pandasnetwork.org/research-resources/published-research-articles/

Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies

https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

Danny and I love you all!