Irene's diagnosis story

Irene was a beautiful and perfect little baby.  She always has been everything I've ever dreamed of.  But as a mom, I had a nagging feeling that something was not quite right.   I ignored it, hoping that it was just me being nervous as a first-time mom.  I nursed her exclusively for 8 months, then mostly until 13 months.   She was just a little bit delayed in a few motor skills, but it was nothing alarming at first.   I remember having some anxiety about reaching her milestones, but they were always met.

021503.jpg (44929 bytes) 8 months


Then at 7 months she began having severe tremors in both hands.  You can see the blur in the arm caused by the tremors.  

But we ignored the signs because she continued to reach the milestones. 

It was around 10 months that I noticed her ankles were collapsing.  The pediatrician said that she would grow out of it.   

She also never could just get up and stand without holding on to something.

She took her first five steps at a year old.  Three weeks later, she still needed support to walk down the aisle as a flower girl.

I quit nursing her at 13 months because I was concerned that she wasn't gaining enough weight. 


081203.jpg (30594 bytes) 14 months

At 14 months, she could not pull up to a stand any longer.   As you can see, she couldn't get down from the sofa like her friend.  She just collapsed down, and I had to help her off.  

100703.jpg (27886 bytes) 16 months

She suddenly began sweating like this.  Her breathing became very noisy.  The pediatrician said that she was just snoring.

A new pediatrician was "very concerned about the loss of motor skills" and got an expedited appointment with a neurologist.


On November 13, 2003, the neurologist told us on the phone that she was positive for spinal muscular atrophy.  Our daughter was diagnosed with the #1 genetic killer of children under age 2.  He told us that only half the children with SMA lived to two-years-old, and if they were still alive at three they were in special wheelchairs and various life-supporting devices.  

He wasn't sure what type she was.  Her age of onset and the milestones she had reached confused him.  Her former pediatrician said type 2.

The pediatric neurologist said that the SMA patients who were under his care and taking a drug called Valproic Acid showed delayed symptoms.  He put Irene on the drug even though I expressed a concern about giving it to her at this young age.  He said it was very safe, and that he was even giving it to a 3-week old infant.  (The drug is highly toxic for children under two years of age.)  And he did not prescribe the required L-Carnitine with it.

Irene immediately felt the effects.  She developed a high fever, diarrhea, loss of appetite, vomiting, could barely open her eyes, and we quit giving it to her after just ten days without telling the neurologist.  It took an entire month to recover from it.  

In December 2003, we flew to Baltimore to see a doctor at Johns Hopkins because he told us that Irene would never have breathing or swallowing problems.  He said that she had type III because she "took steps" (even if she had taken only 1 step in her whole life.)  He also said that she would only have scoliosis problems around school age.  Unfortunately, it didn't happen this way.  These symptoms came a lot sooner than he had predicted.

The next month, her decline began again.  The physical therapist said that she was not a type III, but a type II and was getting weaker.   At 19 months old, her crawling got much slower.  Her breathing began to get more difficult, and she couldn't eat any chunky food anymore.  I didn't realize that she couldn't chew anymore.   I never thought about why I was pureeing all of her food.  And she had begun to choke EVERY time she drank water.


21 months


By 21 months, her quads and abs were very weak.  We had to put pillows behind her because she would fall over after only a few minutes of sitting.  She collapsed at the knees if we tried to make her stand.  She wouldn't crawl anymore.  And I had to get up all night long to roll her over.



After developing yet another high fever, I was given a hospice card and was told by her new pediatrician not to get my hopes up.  It seemed he expected Irene to die in the next few months.  I knew she needed help breathing while asleep, but I kept wishing it away.  We started getting desperate.  I sent another e-mail for prayer and was reminded of The KI Method again.  I decided to delay the recommended appointment for the swallowing examination.

Instead we read the web site more carefully.   I e-mailed the Institute again and got this reply among others, as I kept e-mailing them with questions:  

February 12, 2004, "You asked this before and the answer is Yes!  A sad part about the medical community is they find too much comfort in labels like SMA, but offer no solutions and seldom have any true understanding of what they're dealing with, other than listing related symptoms.  You asked about SMA, which is a symptom of underlying problems.  Addressing the underlying problems is where you can find solutions and that is what TKM (the KI Method) does.  TKM itself, does not work on labels, but does work on the cause of them.  Therefore, when you hear about seizures stopped, the problem reversed, and the damage repaired, as well as heart attacks, cancer, chronic pain, A.D.D., spinal damage, nerve damage, and the lists goes on - TKM didn't work on any of these labels or symptoms; it works on underlying causes.  That's what you'll learn, and that is why it works.  Nothing else known has accomplished all that the understanding of this method has accomplished.  The only way you can really understand is to learn about it, do it and see the results for yourself.

In March 2004, I went for my first Level 1 & 2 class.

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