Erinne Rose Williams is an angel-on-loan. She is a gift from God. I feel very honored to have been chosen to be her Mommy.

  When Erinne was born on May 16, 1997, she appeared perfectly healthy in every way -- 10 fingers, 10 toes, 2 beautiful blue eyes and one cute nose. I had genetic testing done while I was pregnant with her because I was considered an "older mother" at age 36. Every test came back normal. (However, I now know that they can't test for every single disease or condition. It is just not feasible. Since there was no history of neuromuscular disease in either side of the family, they had no reason to check for it.) Erinne had a little bit of a problem coming down the birth canal and fractured her clavicle on the way out. She did not spontaneously breathe at birth, and had to be resuscitated. The docs surmised it was because of the pain of the fractured clavicle -- but now I wonder.

  Erinne's growth and development seemed right on track for the first 7 months of her life. But then I started noticing that she was missing some important gross motor milestones -- pulling up to standing, cruising along furniture and walking come to mind. Then she started losing some skills she had mastered - crawling normally (as opposed to a belly crawl) and then getting to a sitting position by herself. At first I was told I was expecting too much and measuring her against her siblings who walked very early (Claire at 9 mos and Kevin at 8.5 mos) but I knew that was not it. I have worked with young children all of my life and I know what is normal and what isn't. And Erinne wasn't. We made the rounds of various specialists for a couple of months. I was told that an MRI showed she had tumor on her spine which was causing the problem, and she needed surgery to correct it. I took her to other hospitals for a second and third opinions which all said the same thing. Then we went back to the first surgeon and I told him I did not believe Erinne's problem was surgical and I wanted more tests done. So then he sent us to a pediatric neurologist who diagnosed her -- after just a few minutes of watching her -- with Spinal Muscular Atrophy What the heck is that?  The doctor sent her blood off to a lab for confirmation and also did an EMG and a nerve conduction study (VERY PAINFUL TESTS). 

  It all came back positive for SMA. I left there, stunned. I had no idea what SMA was, and what her prognosis was. I was told there was no treatment available, nothing could be done and I was just to take her home and love her for however long I would have her. I later learned that SMA is a motor neuron disease much like Lou Gehrig's disease (ALS) only for little kids. I also learned that she would probably die before she reached her 8th birthday. Someone recently asked me how I felt after that, and what kinds of emotions I had and I had to honestly say I don't remember any of it. I was in a fog and everything was, and is, a blur.  But one thing I do remember is that I was never angry at God for giving me Erinne. I honestly never asked, "Why me?" My life has been so blessed by her. I look at life a whole lot differently through her eyes. Accomplishments I never fully appreciated with Claire and Kevin - and in fact, took for granted -- I now treasure with Erinne.

 Erinne has certainly had more than her fair share of struggles, trials and tribulations. She has had 21 pneumonias, 14 surgeries and 25 hospitalizations. She spent the summer of 2001 (May - September) on life support due to unforeseen post-op complications and was not expected to survive. During that time, she was hospitalized for 101 days and was on a ventilator for 85 of those days. She 'coded' (arrested) 5 times during that period. She failed 3 times to come off the ventilator. She was in multiple organ failure and her body was shutting down. She was just 4 years old. I was told that I needed to accept reality and that my daughter was never going to come back as the child she once was. I was told to let her go. But I couldn't -- I KNEW it wasn't her time. I knew that she still had so much yet to accomplish on this earth. Her work wasn't done. I knew that. I never left her side. I was afraid that if I did leave, then she would leave too, and fly home to Heaven. So I physically kept my hands on her, keeping her there -- with me. Many times her survival was hour-to-hour. Some times minute-to-minute. To this day, I don't know how we got through it. I look back at some of the journal entries I made during that time and it is difficult for me to read them. So much pain and anguish in those words.

  In September 2001 I was finally able to bring my daughter home. Erinne was 4 years old, and a very frail 26 pounds. She did not have the strength to raise her finger to scratch her cheek. She could not hold her head up or sit up in her wheelchair anymore. In February of 2002, I started her on a very specialized tube feeding diet created by other moms of SMA children -- called the Amino Acid diet. I started her on a specialized respiratory protocol called NIV or non-invasive ventilation, instituted by Dr. John Bach in New Jersey. Both of these were not considered to be part of mainstream medical treatments. I took a lot of flack from some members of the medical profession (not her pediatrician or pediatric physiatrist, though) for putting Erinne through these unorthodox (?) treatments. Just 22 months later, I had a healthy, vibrant 6 1/2 year old who now weighed 56 lbs (a gain of 30 lbs!) and grew 12 inches in that 22 month period of time. All because of the AA diet and NIV protocol. The before and after pictures of her are shocking. Erinne got stronger and stronger and never looked back.