Lizzy has Spinal Muscular Atrophy 1( form of Muscular Dystrophy) the most severest type of the genetic disorder. She has diagnosed at around 8 months old but she should of had genetic testing right after birth because she lost the ability to hold her head up shortly after birth. She is 8 years old and never has sat (with out assistance), stand or walk but says almost every day "She loves herself!" She was given a death sentence at her diagnosis that she would die probably before her 1st birthday but be gone by her second birthday. I am here to tell you our miracle will be nine years old in September. Yeah, nine years old. Thanks to the gift of donor breast milk.
She has a fatty acid metabolism disorder because of her disease and has a hard time digesting fat. She had a G-tube placed at 10months old because she was losing her swallow. After, so many trials and errors with fats I had a brain storm with our doctor about using breast milk. Then, he suggested a "wet nurse" and to put an ad in the paper for one. I told him he was crazy there was no way I was going to do that. It was 2004 so I started searching the internet for wet nurses and I found donor banks. I emailed everyone at the banks and I had one wonderful woman email me back and started getting Lizzy donor milk from the donor banks. Then Lizzy was cut off donor banks because of insurance issues and I found Milkshare. I noticed how much stronger she had gotten off the breast milk from the donor banks, how her hair and skin was beautiful and her health was so much better. I was in Panic mode because she had been cut off the donor milk from the milk. Because of milk share I had a mother from Chicago donate her extra milk to Lizzy and my gosh I could not believe how much she improved. It was not the trial drug she was on!! It was because ofthe breast milk that Lizzy improved so much. Her food mixtufre contains an free form amino acid formula but has breast milk added to it for the wonderful things in it and its a fat that Lizzy has no issues digesting at all. . She does amazing and the reason why is because of so many caring moms that supply her. Lizzy is on 20 ounces a day. Breast milk is now an accepted fat for kids with Type 1 SMA. That took years to get that accomplished. So many kids are now on the donor milk because of how well Lizzy does on it. I believe it has helped them live longer, be stronger and get over illnesses quicker. Its a gift to have Lizzy in my life and its a gift to have so many wiling donors over the years that have helped her by donating to her their milk.
Thank you from the bottom of my heart to all the moms that have helped her and for milk share. Our experience has so been so wonderful with so many moms willing to help Lizzy.
We always need breast milk for Lizzy and will continue to give Lizzy donor milk as long as there are moms breast feeding willing to donate to her. Thank you all again.
- Posts : 14
Join date : 2010-01-04
Location : Central Il