Jesse Taormino

Jesse was diagnosed at 6 years old, in September of 2001 with MPSIII A, (Sanfilippo Syndrome Type A.)
Jesse is now offically a teenager at 13 years old as of May 2nd 2008. 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!

Journal

Wednesday, December 3, 2008 4:08 PM CST

Hello to all of our friends and visitors,

Just added Friday December 12th!! Jesse had a school performance for the Holiday today. First here is a video of him running the halls after the program and after lunch. Next will be a video of his class singing a cool song!

This one is Jesse and his class singing and playing "We Wish You a Happy Holiday!"



November came and went before I knew it. Thanksgiving was wonderful. We spent Thanksgiving day with Jack’s family. It was the first year without his mom since she passed away back in August. Then Sunday Jack cooked at Stephen and Erin’s house and we had Thanksgiving all over again with them and my mom. It has been very tough month for us, Jack’s job has been zero. No work at all which meant no income from his job. I have been working 4- 5 hours a day 5 days a week and still trying to keep up everything else I do. I do all the organics shopping and vitamins and supplies as well as organizing and doing most of what needs to be done for Jesse. Jack does do the cooking, and he did a wonderful job of keeping up with leaves as they fell from our 3 large trees in the yard. He was also able to cut down all the garden stuff that needed cutting down or cutting back for the Fall and Winter season. So having the days off gave him time to do these things at least. Fortunately the band is back playing again and they do have shows every weekend this month. (This takes up 2 evenings a week during the week as well weekends, so again it’s me and Jesse) But… the money from that helps out somewhat. It’s not nearly what a 40 hour a week job brings in, but better than nothing! Meanwhile we keep plugging along, knowing that God is in control and he again will pull us through. It seems most of our life, Jack has had jobs that really depend on the economy of things. It’s has mostly dependent on the Real Estate market these past 5 years since he’s been a surveyor. Previously it was sales work. Either way it’s either feast or famine. I really despise the famine days. We do use the feasting days to pay off the debt form the days of famine. Praise God for those feasting days when they do come along!

Jesse has been doing wonderfully! He is happy and loving life. He does miss not being able to be outside as much since the cold weather is settling in. He yearns for the outdoors and sunshine. We have upped his vitamin D3 for the winter months by an additional 400 IU above what he was getting. This helps to keep his mood stable and happy during these days without as much sunshine for him. We had another meeting involving his school and the services he has there. I really can’t wait for this year to end. I am fed up with school. It’s mainly the classroom setting he is in. The special services he receives are very good during his individual work with his therapists. But the classroom is truly wasted time in my opinion. He is learning nothing in there. I can’t wait for Jack to start making money again. Once he does and I can cut back on hours, I will most likely pull Jesse out of school and home school as I did Stephen years ago. Enough about school, on to something better. I don’t want to get too negative during this Season of Joy!!!

Each year we have an event called “Festival of the Trees”. It is a fundraiser for The Kennedy Kreiger Institute each year. It truly is a winter wonderland. I have taken a few pictures here for you to enjoy! Jesse loves going here each year. This year my sister and her daughter both bought trees totally decorated from here as well. They both are beautiful!






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!

That’s about for it now! Have a Blessed Holiday Season and Merry Christmas to all!



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

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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!

E-mail Author: wordinedge@aol.com