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Jesse's Story




Jesse was diagnosed at 6 years old, in September of 2001 with MPSIII A, (Sanfilippo Syndrome Type A.)
Jesse turned 19 years young on May 2nd 2014. We were told at the time of diagnosis (12 years ago now) that there is no cure or treatment. We were also told that he would not live past 10 - 12 years old. 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. We actually were seeing improved cognitive awareness that had left him between 8 and 10 years old. Jesse has been on genistein since June of 2005. 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 keeps fighting and has a will to go on. I too still have the drive to fight this disease as long as God gives me strength, wisdom and resources. This battle unfortunately does become expensive. I believe that every piece of wisdom God gives me as Jesse meets new challenges will help another family in this battle until a cure can be found. I truly believe that this is a season in my life, no one other than God could have prepared me for this. I now pray for even more strength, wisdom and resources to get thru these older years, as Jesse is aging in this disease and I am now over 50 years old as well. It does get harder to maintian the energy level and find the resources and money. Until God gives me a peace not to do anymore other than to comfort my son and let him go, I will continue to fight. So for now, we keep working at beating every new obstacle and challenge that is given us. This is not exactly how I planned on spending my older years in life with my husband, but it is what is given us for the time. I can praise God everyday for my son's health and overall comfort and joy. Then each time new wisdom is given to me and each time we overcome another challenge and I can share with other families, it is a whole new level of praise all over again. PRAISE GOD FOR HIS WISDOM AND THAT HE CARES!!


Fundraising Websites - Crowdrise



PICTURES on the Caringbridge photo page!

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CLICK HERE TO SEE HOW YOU CAN HELP!
If you know anyone who is financially able to help please send them our way. I don't usually ask, but I really feel the need too, as this journey becomes expensive.




CHECK OUT THE NEW BLOG AT:
MPS - Life with a Neurologically Impaired Child



I started a Youtube page to add videos of Jesse doing fun stuff. I see many depressing videos 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


Journal

Saturday, September 20, 2014 4:13 PM CDT

Hello friends and visitors,

It’s been quite a while since doing any updates here. Seems working and updating Facebook have been the only free time doing things. You can find me on FB as Patty Burkholder Taormino if you wish to follow us there.
There have been a lot of ups and downs since May this year. Prior to that things went pretty consistent from Christmas until May. A lot of the issues happened due to substitute nursing. Jesse’s school nurse took off for about 5 days over two weeks and the fill in nurses were not able to do the job well at all. Jesse had 2 falls with one nurse which gave him a major setback in pain. The falls affected his sacral region and lumbar area. Things got much worse with back pain and he could not walk much at all. He his just now starting to feel better after much therapy, but now the fall weather allergy crap and back to school exposure to stuff are here. Fortunately he is healthy other some stuffy nose.

In December we are trying to make our way as a family for the MPS Family conference. It is in Disney in Orlando, Florida this year. Every 5 years they do a Disney conference. Our last conference was 5 years ago with just Jesse and I. I could never do that again without help from hubby. It’s just too hard without help. This will most likely be our last conference with Jesse and the last family vacation until Jesse goes home with the Lord, as it’s getting to be too much to take him places with pureeing all his foods, dealing with diaper changes for an adult in public places and the ambulation issues with no wheelchair vehicle. We really need financial help to go also. We’re trying to raise $3,000 to make this a true family trip. So if you feel led to help us, or get your office or church or family together to donate anything at all, it is all appreciated, no amount is too small. Also if you donated thru the link above, it can used as a tax write off thru the foundation. Thanks so much for any help you can be.

Jesse is loving school. It’s basically his main outings these days. He can go to this till he is 21 years old, so we are grateful for that.



Love to you all and thanks for checking in on us!!!

You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!

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 own good friends and family. 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 past 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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Hospital Information:

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Baltimore, MD

Links:

http://www.teamsanfilippo.org   Support reasearch for a treatment for Sanfilippo Syndrome
http://www.mpssociety.org   The National MPS Society
http://community.webshots.com/user/ptaormino   Taormino Family Photos!


 
 

E-mail Author: wordinedge@aol.com

 
 

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