Autism, family financial distress

APPEAL: Daughter’s Autism and Parental Illnesses Push Family to the Brink
Our 17-yr old daughter Grace has classic autism with communications and social deficits. She requires 24/7 care due to several maladaptive behaviors that emerged after reaching puberty (e.g. destroying clothes, bedding, furnishings). Thanks to extraordinary effort and expense to address her various biomedical conditions (e.g. auto-immune disorder, neuro-inflammation of the brain, gut dysfunction, chemical sensitivity), she is quite strong physically and has never been hospitalized.

Those who have met Grace say she has great potential (e.g. good receptive language, photographic memory, athletic), yet due to our parental health issues we have had to end or reduce therapies that have been working.  Her father’s earnings through consulting have been greatly diminished by three serious surgeries in 2016 (heart and brain). He is trying to get back on his feet financially, but the bills and credit card debts continue to mount. Grace’s care is so demanding that her mother cannot work outside the home and has her own health challenges. Both of us suffer from lack of sleep due to our daughter’s bed-wetting and nocturnal meltdowns. Such behaviors have doubled our electric, water and cleaning bills to say nothing of preventing family travel even to overnight destinations. We haven’t vacationed in almost 5 years. 

Diagnostic and Treatment Conundrum
Recent efforts to strengthen Grace’s immune system through enhancing the microbiome (healthy gut bacteria) by better nutritional balance has reduced somewhat her acting out behaviors. We continue to provide the following: Organic food, multiple supplements, out-of-network doctors, therapists and lab tests, directed exercise, and minimizing exposure to environmental toxins and electro-magnetic radiation at home and school. Although Grace benefited from neurofeedback therapy, music therapy and massage, hyperbaric chamber and infrared sauna treatments, we can no longer afford these. Still, the essentials cost $2,900/month even after insurance reimbursement.

Our Need
This appeal is for financial assistance that would allow us to survive as a family and meet Grace’s needs for therapies and special diets that insurance rarely covers. Your contribution would also help prevent the need to move our residence yet again (4 moves in 8 years), which is very disruptive to all of us, especially Grace.

At the same time, accurate diagnosis is exceedingly difficult when the child cannot express how she is feeling or what food or treatment makes her feel better. We’ve researched emerging diagnostic and treatment methods and would like to try brain scanning/imaging to locate brain lesions and abnormalities associated with autistic behaviors and then target therapies that have been successful in repairing these damaged areas. 

Cutting edge therapies that start with brain diagnostics are not covered by insurance. We appeal to you to help us raise the $4,700 needed to start them before Grace totally loses her childhood and her brain becomes less plastic. Locating the damaged parts of her brain will enable doctors to target therapies more precisely (see 
http://danielamenmd.amenclinics.com/learn-what-more-than-2-million-other-people-already-know/ ,
http://www.cnn.com/2015/01/13/health/brain-scan-images/ ).

The Rest of the Story
We are aging parents in declining health who are desperate to make ends meet, including next month’s bills as our savings are exhausted. Along with excessive healthcare expenses and the usual household upkeep, we had to replace our 20-yr old automobile with 395,000 miles. We struggle to make the monthly payments on our "new" 9-year old used car.
 
Unbidden Reality
Despite such challenges we are committed to give our daughter a chance to become an independent adult who can contribute to society. Your contribution will make it possible for us to continue parenting Grace. It would be a shame to consign this beautiful, mostly gentle child to a life of institutionalization, dependence, poor health and loneliness. Help us preserve her infectious spirit and joy of life. She means so much to us!

Sharing Knowledge
Contributors will receive progress reports on Grace's recovery. Moreover, we will continue to share expertise acquired over the years with parents who’d like our views on the tradeoffs of different courses of action with respect to recovering from autism, cancer and Lyme Disease. It turns out that techniques we have learned to rebuild the body’s immune system address all of these (as well as Alzeimher’s and Parkinson’s). By helping us defray treatment costs, your contribution will have a multiplier effect as we respond to those who inquire about our experiences in fighting these chronic diseases.


Donations

 See top
  • Sidney Levy 
    • $200 
    • 18 mos
  • Sidney Levy 
    • $100 
    • 29 mos
  • Tony Ward-Smith 
    • $400 
    • 42 mos
  • Sidney Levy 
    • $100 
    • 53 mos
  • Tim Kelly 
    • $250 
    • 53 mos
See all

Organizer

Barry E. Stern 
Organizer
Purcellville, VA
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