A Day in the Life of Bev! Her Story, Part 3!

By Mindy Irish

stuffed animals

Written 3.24.14

Bev had a busy weekend!  Katie is celebrating her 11th birthday this week and on Sunday they had her party at Sky Zone, an indoor trampoline park in Fishers.  She loves her stuffed animals and these two new pals in the picture arrived in their home to celebrate Katie!

 

Bev attTeam Filmended a Team Film event at the end of last week.  Team Film was founded by 12 women in the Indy area who love to run, bike, travel, hike and support each other.  One of the upcoming events of this group is to run the Geist 5k in our area.  This is an event Bev and the Hartig family plans to run/walk.  They participated last year as Bob and Bev ran, Katie was pushed in the stroller and Ryan took off with the pack!  Bev’s looking forward to this event again for 2014, which takes place on May 17.  If you want to join Bev and the other members of Team Film in this venture, make sure to visit their website HERE and their Facebook page HERE!

 

Did you know?  Bev was quite the runner in days past!  In her sophomore year at Johnsburg High School in Illinois, she held the 2013 Geist 5kone-mile record in Track with a time of 5:31!  She also had a goal at one point to train for and run the Boston Marathon, but in the mid ‘80s she endured an ACL injury and surgery and her knee has not been the same since.  As she plans to tackle the Geist 5k in May, she reports her HD symptoms cause her to trip more often, but she’s still planning to rise above that and accomplish this event!

 

This week looks pretty typical for Bev.  She has a dentist appointment for Katie, which is usually pretty stressful for all involved (No one likes the dentist!).  She’ll be making it to tennis lessons, a hair appointment and Ryan starts soccer practice.  Bev’s role as wife and mother trumps this disease and she makes no excuses to get her job done!

 

Spring Break is on the horizon and the Hartig family is traveling to Big Sky, Montana to enjoy a week of vacation with their close friends the Jermans.  They’ll travel by plane and will be taking their friend and assistant Micky who helps offer respite and assistance in getting Katie through the airport, on the plane and through the course of the week with all the changes off their usual routine and known surroundings.  The family can’t wait to enjoy skiing, some down time and the mountains.  Bev is a huge fan of the mountains and she looks forward to those gorgeous views that aren’t found here in Indiana!

 

2013 Fiesta 2We’re now about five weeks out from the annual fundraising event scheduled for April 26, 2014.  Bev has an idea to get her kitchen and family room painted before that weekend, but she is not so sure she will pull it off in time!  She desires to have the home looking fresh and updated for the nine to ten guests who stay the night and the many out-of-town visitors who will visit and enjoy time at their home over that weekend.  In addition to her team’s efforts, she’s helping to tie up loose ends with donations for the auction.

 

Stay tuned every couple of weeks as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com

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A Day in the Life of Bev! Her Story, Part 2!

by Mindy Irish

Today Bev and I sat down at 9:45AM on a Monday morning.  She had just gotten the kids off to school and was pretty tired from the weekend.  I caught her in her pajamas and she welcomed my children and me in for a chat.  Her kiddos had been sick over the weekend and the days were long.  Thankfully both of them got to feeling better and could return to school today.  Due to the lack of sleep, Bev felt her strength was down and she chose not to go to tennis class this morning.  She was preparing for a driver to pick her up shortly for a trip to the grocery so she could purchase items to make dinner for the family later that evening.

Bev filled me in on her recent visit to the Indiana Pacers game!  She was nominated by her friend and neighbor Jessie Yeager for the “Indiana Heroes” award.  Great news!  She was chosen to receive the award and was recognized at the February 25, 2014 Pacers’ home game.  In order to receive this prestigious award, the organization was looking for these qualities:

“The Indiana Heroes program presented by Citizens Energy Group serves as one of the premier community outreach programs of the Indiana Pacers. This program honors an individual(s) who have made an overwhelming impact on the lives of others and who, through their unique commitment and humanitarian spirit, have made exceptional and lasting contributions to our community and our State.”

Bev is the perfect fit to receive this!

game 2As part of her recognition, she received this letter in the mail along with four courtside tickets to attend the game.  Bev wanted to take people with her who have been a part of her journey for quite some time and she chose Cindi Berry, Shelley Lewis, and Cami Logan to accompany her to the event.  They arrived at 6:15PM and enjoyed some food from the stadium concession stands.

At half time, they read Bev’s story and she was escorted to the court with Darnell Hullman, a very tall man in his late 60s.  Darnell is known as “Dr. Dunk” from the 1977 Slam Dunk Contest!  Bev reports that she was extremely nervous and was glad they read her story….she didn’t have to speak!

Dressed in a turquoise outfit, Bev stood on the center court line alongside “Dr. Dunk” and they flashed her picture up on the big screens.  This is her bio as fouBev heroes 2nd on the Indiana Heroes Website:

“Bev Hartig and her husband moved to Indiana in 2002. In 2003 they welcomed a daughter that suffers from Cri du Chat, which can be described as severe Down Syndrome; and in 2004 welcomed a healthy baby boy. After facing the many trials in dealing with their daughter’s disability, Bev was then diagnosed with Huntingtogame 1n’s Disease, a terminal genetic disease that is a mix between Alzheimer’s and ALS. Instead of living in fear of how their lives would play out, including a 50% chance their children would inherit this disease, Bev and her husband Bob started their own non-profit organization called the Bev Hartig Huntington’s Disease Fundraiser. So far they have raised over $350,000 towards finding a cure for Huntington’s Disease. Bev has made a huge difference in the Indianapolis community by showing courage in the face of adversity. Instead of giving up and allowing the disease to run her life, she if facing this disease head on and teaching others how to deal with hardship.”

Her souvenir from this event is a wonderful plaque that sits prominently on her mantel in her bedroom.  What an honor to be game 3considered AND the recipient of such an award!  All while we were wrapping up our discussion for today, Bev sits with a smile and positive attitude.  She enjoys watching my two children run about and play with Katie’s stuffed animals while she’s away at school.  Bev always makes us feel at home, offers my kids a drink {they know right where the drinks are now!} and she always asks me about me.  I’m there to interview her and she’s taking time out to find out about me and what’s going on in my life.  I share this because she’s overflowing with joy amidst all her struggle.

Life is hard.  Life is hard for her on so many levels.  But, she’s choosing to make each day positive and meaningful.  I caught a glimpse of a recent post of hers in my Facebook newsreel and just had to share it.  It pretty much sums up who she is and how she approaches each day:

Posted by Bev March 9, 2014

Three things to keep in mind this week:
1. Approach people with kindness and you will improve the world.
2. When you count your blessings, please count your health.
3. You are stronger than you think.

How can you have a bad day after reading that?!  Thanks for the valuable tips, Bev!

Stay tuned every couple of weeks as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com

A Day in the Life of Bev! Her Story, Part 1.

By Mindy Irish

It is has been a long-time desire for Bev to document her journey with Huntington’s Disease and as the days carry on, she wants to make sure these moments are captured in writing.  She and I have the privilege of sitting down in person together every couple of weeks to talk and question about the past, the present and the future.  These posts are her story-her challenges, fears and successes written down to share, celebrate, remember and educate for those who know her and even those who don’t.  Stay tuned every couple of weeks as we add more to the story about this amazing woman!

Bev Hartig is a wife and mother living in the heart of Hamilton County in Indiana.  She was adopted from birth and had the opportunity to reconnect with her birth parents while in her late 20s.  Soon after, it was discovered that her birth father carried the gene for Huntington’s Disease and was just starting his journey with the degenerating disease.  Bev knew she had a 50% chance of inheriting HD, so she chose to face the facts and get tested.  And the devastating results were positive that she, too, would eventually have the same experience with Huntington’s that her birth father was having.

For the next 10 years she kept this diagnosis a secret from many in her life.  She feared losing her job or the experience of discrimination from having the disease, so at the time it was just easier to keep it quiet.  Getting diagnosed in the late 90s, she didn’t have symptoms until some four or five years later, so the pain and discomfort at that time came in the mental anguish of hiding something so large from nearly everyone she knew.  She was able to attend support groups early on, but it was hard to find anyone to relate to who was of similar life stage and advancement of the disease.  Many were years older and much further along with their symptoms, so it just brought on more fear and anxiety than help to her.  Additionally, there was little online support or stories of others with HD, so she knew at that time that eventually she wanted to get her story out there so others could understand and possibly relate.  It became her hope that her story would make a big difference in the world.  But, in all this, she still lived in silence.

FamilyBev and her husband Bob eventually moved to Fishers, Indiana, but Chicago still felt like home.  In time she was making more friends in the area and they welcomed two children to their lives, Katie in 2003 and Ryan in 2004.  As signs of the disease started to appear, Bev knew that keeping it a secret was no longer an option.  Even more so, her desire to raise awareness, education and funds for a future cure was growing, but how could she do so when no one around her knew what she was secretly facing?  So she embraced the fact that silence was no longer an option.  It was time to share out about Huntington’s Disease!

In late 2009, she sent notices to many of her friends and invited them over for an important announcement.  Serving beer and chili in the basement, near 50 people gathered to support the Hartigs for what Bev called her “Coming Out Party”!

“I shared my story, informed everyone that I have Huntington’s Disease and they were blown away, yet supportive at the same time.  After this event, I so wished I would have come out about it much sooner!”

After the party, they sent out forms asking friends and neighbors if they would have interest in joining “Team Bev” to establish a committee to launch an annual fundraiser towards finding a cure for this disease.  16 people replied and roughly 12 ended up taking spots on the inaugural steering committee, developing plans for an annual event to raise funds for HD research.  It warmed Bev’s heart to see how so many people could come together, using their gifts, connections and resources to creatively plan for this event.

“After we created the Foundation, this finally became home to us!”

Eventually, Bob and Bev realized the possibilities of this event and formed The Bev Hartig Huntington’s Disease Foundation, 2011 friendsIncorporated.  Their first event was held in the spring of 2010 and drew near 200 people and upwards of $80,000 in donated funds!  The steering committee continued to meet November through April of each year and created themes for each of the subsequent annual events.  “Derby”, “Mardi Gra”, “Fiesta” and a planned “Hoe Down” for 2014 followed suit, raising between $80,000 to $150,000 annually at each gathering.  This ticketed event is held at a local country club and involves a silent auction with donated goods and services from many local businesses, dancing, a live auction, a heart-felt share out from Bev and Bob, food, spirits and fun.  This truly is a night to celebrate Bev and spread the word on her story to raise awareness for a greater cause.

Bev’s dream was coming true.  She stepped out of her silence, drew a team together, and is making an impact of hope towards finding a cure for future generations.  She realizes she won’t see a cure in her lifetime, but her passion is to use her life’s story to raise funds towards the cure for those with HD in generations to come.  If her children end up with the disease, she is making it her mission that they won’t have to endure what has impacted her life.  Together with her, we’re all hopeful that her life’s story will bring about a cure!

So as of March 2014, where is Bev now?  What does a typical day look like in her life?  In late 2013, her symptoms had progressed and the doctors determined that Bev could no longer drive.  Each time a new symptom sets in and intensifies, she grieves the loss of life as she once knew it, a life of more independence and freedom to go about as she pleased.  An online sign-up calendar was established and people that know her can sign up to bring the family a meal, spend time with Bev and drive her where she needs to go.  Bev now relies on a hired driver a few times a week and the willingness of friends to help get her to appointments, the grocery and errands in her day.  She has daily hired help for after-school hours to help with the children and evening tasks around the home.

“Losing my license in my forties makes me feel horrible and frustrated.  That is not something that happens to people my age, that seems like something for the elderly.   I long for the time where I would just jump in the car and take Ryan to DQ for an ice cream.  It’s the little things I miss!”

While much is changing and each day looks different, Bev makes it her goal to get to as much as she possibly can.  As she sat dressed in her tennis gear during our talk together, she had just returned from one of her twice-weekly tennis lessons with friends.  The weekend before she and her family took to the slopes of Colorado, skiing together as they love to do.  Bev and Bob did notice on this trip that her balance was the most affected since their last ski venture….but she is still out on the slopes making memories and loving every minute of it!

“I won’t let much stop me!  I feel we should always keep trying because the day I stop is the day I give in to the disease.”

Each time a new symptom sets in, she grieves a little more and gets really anxious about the situation.  She has not been depressed to the point where she wants to stay in bed or just lay on the couch, but rather the progression of the disease brings out anxiety for what is to come and frustration for what is lost.  Her current symptoms include increased twitching in her hands and feet and more caution and reserve in her personality in social settings.  Amidst all this, she still takes on each day and makes the most of it, offering a huge hug and gorgeous smile to anyone that comes her way!

cropped-bevbob.jpg“I’m choosing to power on because I need to be a wife and a mother and it’s my daily passion to find a cure for Huntington’s Disease so my kids and their generation will never, ever have to endure this!”

Stay tuned every couple of weeks as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com