India Olivia Taylor died on October 11th 2013 after a six-year battle with a devastating neurological disorder that caused her to have thousands of seizures a day. She was sixteen, beautiful, bold, bad-tempered, and quick-witted. She dreamed of: moving to Japan, being a voice actor, having a boyfriend, riding a horse again, and being an international traveller. Everywhere India went she sang. She even sang in her sleep.
India had chutzpah and was proud of her Eastern European roots on her Dad’s side. For a while she even wore a star of David. She had a talent for mediation and helping people resolve disagreements. I often thought she’d be a psychologist. After she died, many people were kind enough to share their stories of India with me. My favourite was her art teacher’s. She told me that in class India was always a peacemaker. This makes me very proud.
Fall on me, dear 
A Year and a Day…The Marathon Project
After 6 years cycling over 42,000 miles throughout North America and this year’s 7th annual event running 100 miles, I will in 2013
attempt the world consecutive day record running a marathon. 26.2 miles 366 straight days raising Epilepsy awareness one marathon and mile at a time.
2012 Key Largo to Key West 100 mile run 32 hours
2011 Miami to Venice Beach 8500 miles (the long way) bike
2010 Miami to Anchorage 6700 miles bike
2009 New Years 24 hours 301 miles bike
2009 Valentine 50 mile run 11:20:00
2009 Miami to Canada and back. 6500 miles bike
2008 Denver to Miami 8100 miles (the long way) bike
2007 Anchorage to Miami 6200 miles bike
2006 Seattle to Miami 4038 miles bike
The marathon record I WILL BREAK pales in comparison to the challenges that these children, their love ones and care takers go through… every day. I am going to run the 366 marathons for the people behind the scenes who never get recognition while giving 100% to the finding ways for those with Epilepsy to live well or for working in research trying to find a cure. I am going to run for Epilepsy awareness.
“I remember. Standing, Watching my son Nyle. I can’t forget, simply to many reminders, I won’t let go, I do not have the strength, nor give up. I remember being crushed to my knees begging, Begging for it to stop. I asked for one final wish. With none remaining I still am able to dream. I’ve been in the arms of others not so fortunate. Just one more breath, spoken word or moment. One Seizure to Many, One Mile not Enough.” Glenn Fenster
from Miami Herald…..
Aventura man tackles Keys ultra-marathon to raise epilepsy awareness
In the past six years, Glenn Fenster has made six solo bicycle trips across the country to raise awareness of epilepsy. This year, he skipped a seventh epic pedaling journey to watch his son, Nyle, graduate from high school.
But Fenster, 51, a tennis instructor and poet, says he didn’t want to stop a mission that began nine years ago and has become all-consuming, leading him to him downsize from an apartment to a tiny room and to give up his Jeep Cherokee for a bike.
So to keep his mission in the public eye this year, Fenster will attempt to run from Key Largo to Key West on Saturday. His motto is “one seizure is too many, one mile is not enough” for those suffering with epilepsy — the chronic neurological disorder with which his only child was diagnosed at age 2.
While the only significant inclines occur on the bridges, nearly half the people who start the individual 100-mile race fail to cross the finish line at Smathers Beach in Key West.
“It’s a surprisingly low finish rate considering the flat course,” race director Bob Becker said. “It’s tough because of the heat and humidity factor,” especially for out-of-state runners coming from cooler climes.
Fenster says he is running 100 miles for the number of seizures some children have in a month and others have in a single day.
He will never forget watching Nyle have his first seizure in his crib. At the time, he had no idea what was happening.
Nyle had countless seizures over the years. Some were just blank stares and others meant violent shaking. “A minute could go by and you are standing, watching, praying and begging for it to stop,” Fenster said.
Thanks to medication, Nyle has not had a seizure in 2 1/2 years. He’s attending his prom Saturday night, the day of the race. Next, it’s off to college to become a chef.
While his son’s epilepsy seems to be under control, Fenster continues his mission for the other children with the disorder. He has a website, http://www.destinymaker.org, but it is not a non-profit. He asks that anyone who wants to make a donation do so with an epilepsy charity.
After a recent workout in Aventura, Fenster declared he was ready for the century run, which is a little less than the equivalent of four marathons back to back.
“We’ve calculated over 182,000 times my feet will hit the ground,” he said.
It will be hot, with temperatures in the mid 80s during the day and high 70s at night. But it will help if it is overcast. The weekend forecast calls for scattered thunderstorms, about a 30 percent chance, with 8 to 9 mph winds.
Fenster has no illusions of winning the race. He’s running to finish.
To do so, he has trained hard, about five hours a day since Nov. 1. His recent routine has included running five half-marathons (13.1 miles) a week, Monday through Friday. On Saturdays, he does a longer run. He started with a marathon (26.2 miles) and worked his way up to 56 miles.
He also has cycled about 4,000 miles since New Year’s Day, religiously works out with weights and does a stretching routine for range of motion. He’s in peak condition despite a bike crash that broke his ribs and teeth and a procedure to remove a growth on his back.
Fenster, a vegetarian since 1994, has worked to fatten up for race day. At 5-foot-9, he said he will eat a good pasta dinner, nuts and beans for energy stores to boost his weight to about 167 pounds. He’s normally 160.
On race day, he’ll take a hot shower and drink coffee before heading to the start line. When he runs, he breathes only through his nose and keeps his mouth shut.
“I call it running by chi,” he said. “Your body completely relaxes. It gives you longer endurance but is not for a person trying to run a 2-hour and 30-minute marathon.”
Chi is the central underlying principle in traditional Chinese medicine and martial arts, and literally means breath, air or gas.
Becker said Keys100 provides fully supported aid stations along the way. Water stations are available every five miles.
“Winning for me is getting to the starting line,” Fenster said. “Finishing is gravy. If I do not finish in the 32 hours, I’m going to keep going, even if it takes me two days. I will crawl on my hands and knees, scraping my skin, and continue until I make it.”
Fenster finished the race. Declaring after crossing the finish line that he felt “half the man physically twice the person spiritually.” He was the final person who did and said “last never tasted so sweet.”
Now Fenster looks forward to new challenges, one that could bring a world record in consecutive days running a marathon. His next event/project beginning January 1st 2013 Fenster is calling A Year and a Day…The Marathon Project.
Wow Glenn, thank you for your energy and good work. With people like you on our side we can’t fail. Thank you for sharing your story. It makes me happy to know people like you are out there.
Dear Lesley
I am not sure if what I am about to say will be of any help but here goes. I have two children suffering from a metabolic condition called Melas. Late 2008, my son was admitted to Liverpool Hospital with seizures. He has been admitted to the same hospital many times prior. This time, the doctors were not able to control his seizures which lasted more than 2 weeks non stop. He was given days or weeks to live. There was not much the doctors could do, and so he was discharged to live out his fate at home.
Just before he was discharged, we were introduced to Tibetan herbs by a friend. We managed to get those herbs for him. Normally, the doctor would need to examine him before the herbs could be prescribed but he was not able to travel to the hospital which is located in India. To make the long story short, my son is still bed bound, but he is able to speak, watch TV and communicate with us to a certain degree. I am saying anything other then we tried something we did not know much out of desperation and he is recovering, albeit at an extremely slow pace. Please google this site (http://www.men-tsee-khang.org/index.htm). This is where we got the herbal medication.
Best wishes
Dear Eddie, Thank you for taking the time out of what must be a very busy day to write to me. It’s generous of you. It’s difficult caring for one ill child but two. How can you manage? I hope you have help?
Thank you for sharing your experience. I know what it’s like to watch your child suffer with seizures and it’s gut wrenching. My heart goes out to you and your boy. I hope he continues to improve. I will think of him.
I will take my time and look at the website you suggested. Thank you so very much.
To India’s mother – My heart aches for you and I wish there was an answer for your family. Our 20 year old daughter has Type 1 diabetes but that is nothing compared to what you face. You must be exhausted.
A long distance hug from the other side of the world from our family to yours.
LFM
Thank you for sharing your story and the hug. You’re right Mark and I live in a constant state of exhaustion. We worry a great deal.
There is one thing that I notice here Lesley. You have a lot of people worldwide who care about your family. No reply needed or expected because we know you are busy
Hi LPM,
It’s a very nice feeling knowing that people are keeping their fingers crossed for us.
Thank you.
hi there,
i read your story here in australia.. it even got into the papers here!
i encurage you to look up the following webpages:
http://www.marioninstitute.org/
http://www.marioninstitute.org/biological-medicine-network/our-founders
http://www.marioninstitute.org/biological-medicine-network/patient-scholarship
http://www.paracelsus.ch/paracelsus/paracelsuse/portrait-en/welcome
all the best!!!
That’s very cool. This looks very interesting. Thank you.
Dear Lesley
My heart goes out to you and India. Thanks for your sharing. It breaks my heart to read of your situation. We walk this journey together though we are thousands of miles apart. The suffering, the pain and the little joy all mIx up into a bitter sweet cocktail which we sip daily.
Bless you India and bless you too Lesley.
I heard India’s story this morning on the CBC and I was very moved. Let India know that her story has touched me and many others and that she will be in my thoughts for a long time to come.
Of course, I will Charles. We thank you for thinking about our lovely India.
I have a rare disease too. Actually 2. Have you heard of the Global Genes Rare Project in California?
Hi Heather, my husband has looked into GGRP. He follows them. Though he hasn’t found much for India there unfortunatly. I’m sorry to hear your ill. I hope things are okay for you and there’s some treatment. I will visit your blog. Thank you for writing. xox
My syndromes affect 1/200,000 people (I’m not sure about your daughter; I’m sorry). Not to try to convince you about Global Genes but their purpose (in my opinion) is to support those of us affected by ALL/ANY rare disease. I was just at an event this weekend that was hosted by them and it did so much to bolster me on my road. I only ran across your blog last night and don’t know much yet – I look forward to reading more.
I know we get our support in the ways that work for us – only wanted to share an additional resource that is out there. 🙂
Just read your words via an old art school friend, tears in my eyes. What you are doing is good, very good. She looked like a wonderful person.
I don’t think anyone goes away, they are part of us, it is continuous, all of it. All connected, transforming from one state to another. Poussiere des etoiles. Stardust with trajectory variables- some paths longer than others, all of us racing into the unknown, in various states.
By paintings explore this.
http://www.angelamcfall.com
Thank you, Angela. What a beautiful letter. It’s funny you mentioned stardust. I’ve been calling Indy’s remains Indy dust because when he was 10 or 11, she looked like Tinkerbell.
We too lost our only child my husband and I had will be 3 years this coming Dec 25 yes on Christmas day. The pain to this day is as real as it was the day we found him non-responsive in his room that day. People keep telling me th a t time will make it better well l’m still waiting.
Thank you for sharing you story I cried the whole time I was reading it reminded of me.
Thank you, Maria for reaching out. I’m very sorry for your loss. I often question why I share my experiences, but when I get letters like yours I remember why. Take care xx