Make your own free website on Tripod.com

                                                                                                                                              

August 20, 2003 - February 19, 2005

My name is Jacob and I was born August 20, 2003 weighing in at 9 lbs 3 ozs. My mom and sister Alyssa didnít think anything was wrong because at first I could kick my legs and move my arms a lot. However within a few weeks my mom started to notice that I wasnít accomplishing normal physical skills, and the skills that I could do at birth I could no longer do.
On January 9, 2004 I was diagnosed with a neuromuscular disease called Spinal Muscular Atrophy(SMA). This disease destroys the nerve cells that control my muscles. Such skills like crawling, walking, sitting, head and neck movement and now swallowing I can no longer do.
My family found out that I had type 1 SMA which is most severe form of SMA. Most children only live to see their first or second birthday! My mom and sister Alyssa didnít like this idea at all, they want me to be here a lot longer than one or two years. So my mom, Nana, and my Great Aunt went to New Jersey to see a special doctor; Dr.Bach. He has given my family hope that if I receive the help of some machines I could live a lot longer.
I am now eight months old and survived through 2 pnemonias, 4 colds, RSV, a collapsed lung and a major surgery to have two tubes placed in my stomach so that I can now receive my food through them cause I can no longer swallow. 24 hours a day I am receiving food through a feeding tube called a GJ-Tube, I also have a G-Tube. I am always hooked up to a machine to monitor my heart rate and how much oxygen I am receiving. Every time my heart beat goes faster or slower or my oxygen drops a loud alarm goes off. Boy does my mom get worried when that happens. I also have a suction machine to use because I canít swallow anymore. My Bi-Pap machine is used at night and when I have a nap to help me take deep breaths. My neubulizer is used over my nose so I can breath in medications. I also have a cough assist machine to help me cough because my muscles are so weak I can't anymore.
Although I will never be able to eat food in my mouth or crawl or walk, my life is full of so many happy memories with my family. There are special toys and strollers that I can now use to help me get around. Every day after school my sister plays with me. She puts music on and dances around the living room. It always makes me laugh. Even though I am only 8 months old I have already been on the news 8 times and in the newspaper 12 times and I even had my very own fundraiser. Once the summer gets warm my family is going to plan a walk to raise money for some of my machines and as well as research for finding a cure for SMA.
God gave me this life and I hope to make as many happy memories as possible.

SMA is the number one genetic killer of children under the age of two
As many as one in 6,000 babies born is afflicted with SMA
As many as one in 40 people is a carrier of the SMA gene
The chance that both parents are carriers is as great as 1 in 1,600