A Day in the Life of Bev, Her Story, Part 16!

This is the insert update in the invitation to the Year 10, 2019 annual fundraiser!

 

Greetings Friends and Family: This year’s celebration is our tenth anniversary of the annual fundraiser!  To give you an overview from Bev’s start with HD, we prepared this timeline:

 

1998: Bev learned that her biological father was in the later stages of Huntington’s Disease. She got tested and received the dreaded news she is gene positive. She lived in secret with this for 10 years, as symptoms started to appear. 

 

2003-4: Katie and Ryan were born.  More disease symptoms became apparent.

 

2009: Bev no longer wanted to keep the disease a secret. She and Bob chose to have a “coming out” party, inviting 50 friends and family to receive their announcement. They served beer and chili in their basement and educated the group on HD. A weight was lifted off Bev’s back!  Bev asked friends to help in the fight against HD and the first steering committee was formed for a fundraiser.

 

2010: The first event was held in April and 200 people attended, raising an amazing $80,000 towards finding a cure! Since then, the event has had a theme each year, drawing 150-200+ attendees per gathering!

 

2013: Bev enjoyed a “Bucket List” girls’ trip to Ft. Myers, Florida!

Bev’s symptoms worsened and it was decided that she could no longer drive. Bev’s reply, “Losing my license in my forties makes me feel horrible and frustrated. This is not something that happens to people my age. I long for the time when I would just jump in the car and take Ryan to DQ for an ice cream.”

 

2014: The Hartig family hires drivers and helpers to assist Bev through the week. She still enjoys playing tennis with her friends, lunch dates, and doing all the grocery shopping for the family.

All funds raised to this point were donated to other HD non-for-profits, but in order to send all donations to research for a cure, “The Bev Hartig Huntington’s Disease Foundation” (TBHHDF)  was created.

 

2015: The Hartig family participates in the Geist 5k, as Bev walked the entire event and Katie rode in the stroller pushed by Bob!  Bev is now taking two naps a day to maintain her energy. Her gross and fine motor skills decline and she had her first major fall, cracking her head open.

 

 

2016: At the April “Hero”-themed event,  TBHHDF hit the $1 million dollar mark of cumula

 

tive funds raised to date for research for a cure to this disease! Bev enjoyed a “Bucket List” trip with friends to Aruba!

 

2017: Bob and Bev traveled to Aruba in October to celebrate 20 years of marriage!

The disease began to rear its ugly head in many ways. Word pronunciation and articulation grew difficult for Bev. She has a sincere fear of falling or choking, common symptoms with HD, and she needs her food cut into small pieces or blended so she can best chew 

 

and swallow.

Bev’s chorea (sharp movements) are more pronounced and she receives more comments from strangers in public such as, “Are you ok?”, “What’s wrong with you?”, or “Are you drunk?’  Falls become more frequent in her day-to-day living.

 

2018: Multitasking and higher-order thinking skills become difficult.  It takes her 90-120 minutes to get ready in the morning. She can no longer play tennis with her friends.  She is emotionally challenged with the impact of the disease, as depression and loneliness set in. She reports, “My gre

atest challenge is having to step back from my role as a mother and allow others to assist them and me.”

Bev turned 50 in July and enjoyed “The Summer of Bev”!  Loved ones had parties for her and Bob hosted a grand celebration, drawing many friends and family.

 

2019: Bev needs more hands-on assistance to maintain her balance and walking. She falls frequently and needs help getting ready daily.  Holding a conversation is difficult. She sleeps on the main floor to avoid using the stairs.

She and Bob take weekly “date nights”.  Bev has an amazing positive attitude, smile, and offers firm hugs. She genuinely asks, “How are you doing?” and family members report she never misses a birthday card or phone call!

 

Bev’s story is tragic, yet common for those individuals and families battling this disease. She and her family are using it positively to educate others, to fund research, and collectively believe in hope for a cure!

 

We thank you for your participation in our lives and TBHHDF to this point. To date, $1.5 million has been donated by YOU to fund research for a cure to this disease.  We are eternally grateful for your generosity and look forward to having you celebrate a grand event with us on April 27th at 7PM!

 

In great hope to cure HD,

-The Hartig Family

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