Mike Taylor

My name is Teri Taylor. Our eighteen year old son, Mike, was born with Intestinal Lymphangiectasia (IL), which is an incurable life-threatening illness.


Mike was going to the hospital every 2 weeks for infusions for 15 years. Mike is now giving himself his own infusions of calcium and albumin each week at home. He is also giving himself an infusion of IVIG every 4 weeks. He has had eight surgeries and over 300 infusions!
Mike will need these infusions, or what he calls "tune ups", for the rest of his life in order to stay alive! IL is so rare, that we have only found 15 patients, like Mike, in the world!


Children's Hospital Central California has helped us to set up this web site. We are seeking doctors who have treated IL or patients with IL in order to find new treatment options or even a cure!


Mike has a wonderful positive attitude and he tries to live a normal life. He is a freshman in college with a 3.8 GPA. He has a weekend job and is saving for a car. Mike loves soccer and snowboarding. He always enjoys going to watch the Fresno State Football games with his friends when they play at home. Mike has helped to raise money for our local Children's Hospital for years. It's his way of thanking all of the great nurses and doctors who have cared for him for so many years.


We are asking everyone to sign our guestbook and to pass Mike's Story along to everyone in your address book. (Even though you may not know of someone with IL, you could be the link that leads us to our goal!) Mike is our borrowed angel and we would like to keep him for a long time. Wouldn't it be great, if together, we find a cure for Mike!

Our heartfelt thanks to each of you who are helping us in this way. We appreciate all of the prayers and kind words of encouragement. We are so grateful to have such wonderful family and friends!

Best Wishes,
Teri, Ken, Joe, Brian, Steve and Mike

We were contacted with information about a potential "cure" for Intestinal Lymphangiectasia! It is a research study called The Dave Project. We are cautiously optimistic but it does look promising. You can view the research study at:
http://daveproject.org/viewfilms.cfm?film_id=599






Iron Mike Song
Songs of Love
src="http://home.comcast.net/~Taylor.Theresa/01_Track_1.wma" autostart=true loop=true height=40 width=170>






MIKE'S SOCCER ARTICLE October 2006

Karl Dewazien, CYSA State Coaching Director, put Mike's Story and "Iron Mike" Song on his web site. If you would like to see it, just go to:

www.fundamentalsoccer.com


MIKE WAS ON WORLD TALK RADIO!!

Brian (Doc) Halliday interviewed Mike about soccer and he was able to share his story. It was heard in 35 countries, around the world! We are hoping that a doctor or patient who knows something more about Intestinal Lymphangiectasia (IL), will hear the show and contact us.

If you would like to hear the show, just go to:

http://www.worldtalkradio.com/show.asp?sid=26

look under - recent shows and click on Inside Soccer on 2006-04-29. Then click on segment 11 and you can listen!



Some of my favorite links are:

www.findinggodinautism.com


Here are a few of Mike's friends that you may want to visit and leave a kind word of encouragement.

http//www.caringbridge.org/visit/darla

www.christopherdiamond.co.uk
http://www2.caringbridge.org/ca/dannymunster
http://www2.caringbridge.org/ca/parkerfritsch

Journal

Saturday, February 9, 2013 4:53 PM CST

Hi Everyone,

Hope you are doing well!

Mike is enjoying his first year at college! He has been doing well. Mike is now giving himself his own infusions at home. After going to the hospital for his infusions for 15 years, he is now able to treat himself at home! He has learned to access his own port, run the weekly infusions and even to draw labs. Just call him DOCTOR MIKE!

Mike's albumin level came back at 4.3 which is the first time in his life that he has been right in the middle of the normal range. He said, "So Mom, this is how you feel." He feels so much better!

Mike and I went to see Dr. Marvin Ament, Mike's G.I. doctor. He is willing to write a paper on Intestinal Lymphangiectasia (IL). We are so grateful that he is willing to help us as we have been searching for other IL patients and doctors who have treated this very rare condition for years. Our goal has always been to find new treatment options or hopefully a cure for our loved ones.

We are asking for anyone who has IL, to contact me
Teri Taylor
Taylor.Theresa@comcast.net
to complete a list of questions about IL.
The more complete information that we can give to Dr. Ament, the more helpful the paper he writes will be.

I will send you the completed form of Mike's information. You could use that as a "go by" for your own IL patient. Also, please pass this information along to any IL patients that you may be in contact with.

I believe that this will be a great way to learn more about IL and to give our kids every chance to live the healthiest life possible!

Best wishes,

Teri, Ken, Joe, Brian & Leah, Steve and "Iron Mike"

Hospital Information:

Patient Room: Craycroft

Children's Hospital Central California
9300 Valley Children's Place
Madera, CA. 93638-8762
(559) 353-3000

Links:

E-mail Author: Taylor.Theresa@comcast.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.