AA Diet Info for SMA

Based on Families Experience

Lizzy’s Diet

Lizzy’s diet, type 1, age 8

  • 1 Pack plus 4 TBS. Tolerex
  • 20 oz. breast milk 20-22 cal to make 1600cc
  • Water to make 1600 cc volume
  • 60 cc blended juiced mixture of organic spinach, organic Granny Smith
  • apples and red potato (all raw and juiced) 28 calories/day
  • 1 jar Beechnut pears,apples and bananas 4 ounces 90cals
  • 1 jar beechnut green beans 50cals
  • 1 jar tender harvest organic bananas 2.5 ounces 70cals
  • 2000IU Vit D 3
  • 1000mg Vit C pure ascorbic acid
  • 1-2 caps Organic India Turmeric
  • 1 scoop NanoVM multi-vitamins 4-8
  • Ubiquinol 50 mgs
  • Calcium citrate 400 mg
  • 2 capsules of Essential Aminos by Solgar (1200mg)
  • 1 Jarrow Branched Chain Amino capsules
  • 90 mcg vitamin K2
  • 4-5ml Carnitor
  • 1/2 cap B-Complex
  • 1/8 tsp sea salt
  • 1/4 tsp safflower oil
  • Blended with water (when sick unflavored pedialyte 1/2 bottle in place of some of the water)
  • 1 tablespoon Miralax at night with 2 Florajen 3 caps in a 30cc mixture given in her night feeding
  • She also has about 200 cc of water flushes a day

Lizzy has SMA Type 1. She has been on the AA diet since she turned 1 year old. Immediately after starting her on the AA diet, Lizzy had less secretions! I thought there was something wrong with her, but she was actually better than ever!! Lizzy can not tolerate a lot of baby foods or fat, so at 2 1/2 years old we started donor breast milk. Her over all health totally improved again within a few weeks after starting the donor milk. Lizzy had not been hospitalized until this past March 2011, since she was 17 months old.
I started juicing her some organic spinach, granny smith apples and red potatoes late last year. I believe the AA diet, her respiratory care, supplements, and trial meds, have all contributed to her strength and well being. Diet is SO VERY important and so is respiratory care. Lizzy turned 8 years old in Sept 2011.


This website explains the accurate amino acid diet for spinal muscular atrophy patients. For over 17 years, this diet has been used successfully in many SMA patients.Those following this diet appropriately are typically healthier and stronger than others similarly affected by SMA. Because this diet hasn't been studied by medical professionals, it is often not properly prescribed. I believe this is a disservice to SMA families striving to access all available care options for their children. This website has been established with the hope that more families can understand how to safely and optimally use this diet. Any information contained here is based on the opinion and experience of many families.