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Jesse Taormino 
Jesse was diagnosed at 6 years old, in September of 2001 with MPSIII A, (Sanfilippo Syndrome Type A.) Jesse turned 14 years young on May 2nd 2009. We were told at his time of diagnosis that there is no cure. So after much study of the disease and what it does to our children, I have decided to work on diet and supplements to try and make Jesse as strong as possible with whatever time God blesses us with him. So far it seems to be working. We were told diet has no impact, but I really feel they are wrong. I Know it will not cure him, but it sure has given him a better quality and a happier life so far! In 2005 a professor in Poland ran across a soy isoflavone called genistein which could help in reducing the storage material in our children with MPS III. It was not proven in humans at that time, but I quickly contacted him, did as much research on genistein as I could find and decided to try this with Jesse. I can honestly say that we have not seen any regression since June 2005. We actually are seeing improved cognitive awareness that had left him between 8 and 10 years old. Here is a poster article on studies that have been done since this time. Genistein -Subtrate Reduction Therapy It is a pdf file, so give it a few minutes to load. We never give up hope. God always provides us new opportunities and continued joy in spite of MPS. Children with this Genetic disease have a life expectancy of 12 - 15 years on average. Jesse we hope, will go on to the maximum or longer!

PICTURES on the Caringbridge photo page!
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Click here to find our how to help! If you know anyone who is financially able to help please send them our way. I don't usually ask, but right now I feel the need to!
CHECK OUT THE NEW BLOG AT: MPS - Life with a Neurologically Impaired Child
Recently I started a Youtube page to add videos of Jesse doing fun stuff. I see many depressing vidoes of MPS kids, and I really want to put more inspiring ones up to bring smiles and joy to life, and not so much despair. Patty's Youtube page Check it out when you have time.
Journal
Sunday, July 5, 2009 7:03 AM CDT Welcome,
Another month has gone by. Thank God, there’s not much to report on Jesse. He has been doing well and recovered just fine from the seizure back at graduation time. He is going to the summer session of school for most of July, then he’s off school again until the end of August. We didn’t do much on July 4th, just hung around the house mostly and relaxed. After working all week, I am just worn out by the weekend. I think menopause is part of my issue. I am going for a physical on Monday for myself. If anyone is interested in being a "Big Brother" or "Big Sister" to Jesse a few hours a week in the evening before or after dinner or on weeekends, I think he would appreicate having someone to play ball with, take a walk with etc. Just contact me and let know. We don’t have anything planned for the summer, no vacations or anything, so things will be ho hum around here for the summer. Jack’s fishing trips have been minimal this year as well since we don’t have a vehicle to tow the boat with. Please keep praying something changes here financially. I just see the hole getting deeper. I know God can change things, I just pray it is very soon.
Jesse has just started phase two of the biofilm protocol. We have seen a huge change in his BM’s and he is so much better while doing this. I can’t wait to have this protocol done by the end of summer. It’s a slow and gradual process. Many of you ask what is biofilm.
The biofilm produced by these resistant organisms can only be see by electron microscopy and makes it difficult to culture these bugs. So many times we don’t know they are there until we hit major GI issues and sometimes behavioral issues as well, especially OCD type behavior and pain issues from constipation.
Biofilm is: - Resistant strains of microorganisms maintain their viability by producing a polysaccharide matrix that protects them from the hostile environment in which they are trying to survive. This extracellular matrix is called biofilm. Our normal flora also produces a natural biofilm, but resistant organisms produce their own biofilm which then takes over, preventing the normal flora from flourishing.
The biofilm produced by these resistant organisms can only be see by electron microscopy and makes it difficult to culture these bugs takes over, preventing the normal flora from flourishing.
Here is the page with the protocol listed that we are using. Biofilm Protocol.

That's about it for now. Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your good friends. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!

Many photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Read Journal History
Hospital Information: Home
Baltimore, MD
Links: http://www.lsdsonline.com Support Forum for Lysosomal Storage diseases including MPS and ML! http://www.mpssociety.org The National MPS Society http://community.webshots.com/user/ptaormino Taormino Family Photos!
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