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Thankful

Thankful

John’s Genetic Test for Huntington’s Disease

In late November, 2015, John shared with our children and their spouses, that he was going to have the genetic test for Huntington’s disease (HD) after living for 37 years AT-RISK.   He felt he owed it to his children.  We made an appointment at the UC Davis Center of Excellence in Sacramento and spoke Dr. Vicki Wheelock and Mara Sifry-Platt, genetic counselor.    HOPE was more important to me now than it had even been.

We had to wait six weeks to find out John’s test result and I was thankful it was during the Christmas Holiday which was busy and festive, and kept my mind occupied.  It was when I was lying in bed trying to go to sleep that my mind would not be still.   Click here to watch a video on Mara talking about predictive testing.                                                                 

On January 8th, 2016, John and I held hands as we waited in the patient room.  When Dr. Wheelock entered and sat down, my heart was beating so fast I felt dizzy.  I could tell John was nervous, squeezing my hand and taking deep breathes.  Mara, was also in the room as Dr. Wheelock asked if we wanted to hear the result.  I looked at John, and he nodded.  

Dr. Wheelock shared the result which was negative.  My shoulders dropped and my hand covered my mouth.  I have not seen John cry more than two times during our life together, and this was the third time!  We are so grateful and blessed and now our children do not live in the shadow of HD.

Locations in the San Francisco Bay Area Locations that test for HD.  Kaiser Permanente San Jose  

Stanford Center of Excellence and UCSF Center of Excellence

We Can Never Lose HOPE…

 

 

Thankful

My Grateful Heart

To say “I’m grateful” is an understatement, and quite frankly, there isn’t a word that truly expresses the thankfulness I carry in my heart everyday.

Why am I appreciative?  In 2016, my husband, John, decided he wanted to to be genetic tested to find out his gene status for Huntington’s disease (HD).  Since HD is genetic, a negative test result meant he could not pass the mutated gene on to his children.

Our daughter Vanessa Garrett

Fast forward to 2021.  In February, our son, Keith, and his wife, Fran welcomed their first child, our first grandchild, into a family FREE of HD.

 I volunteer for the nonprofit, HDSA, and their Vision  Statement is, “A World FREE of HD“.

For 38 years, I worried about John and our children, praying they would be spared.  Now, I sleep soundly at night and thank the Higher Power for this gift.

Not every HD family is as lucky as mine, so now I pour my energy into supporting HD families in the San Francisco Bay Area by being the Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  

We Can Never Lose HOPE…

Visit my HD Advocacy/Author Website:  [email protected]

Please make a donation to HDSA and help in the fight against his brain disease that has NO CURE.  HDSA donation page

 

 

 

 

 

 

 

 

Love, Thankful

If My Heart Had Wings

May is Huntington’s Disease Awareness Month, a time to remember those we lost to HD and to honor them.  So, today I think of Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, embrace their memory admiring the courage they portrayed during this HD journey. 

If my heart had wings I would fly to heaven and enfold these three (3) women and thank them for the enrichment they bestowed upon my life. The people with whom you surround yourself have an enormous impact on your life. In many ways, they shape it.

The book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is to honor these three (3) women who taught me about forgiveness, kindness and unconditional love. John continues to remind me, by the way he lives his life, of these valuable virtues.

Even though my children, Keith and Vanessa, only knew their aunts for a short time, Huntington’s disease stole them away from us, they positively impacted their lives and for that I’m also thankful.

 

 

 

 

We Can Never Lose HOPE…..

Please consider making a donation to the nonprofit, HDSA.  Thank you.

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:  https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to HDSA.

Thankful

Celebrating Thanksgiving Will Be Different This Year

This Thanksgiving will not be like any Thanksgiving ever before. The culprit is COVID-19, the pandemic that we have been struggling with for most of 2020.

With that said, my family, Keith, Fran, Vanessa, Scott and my sister’s family have decided to all stay home.  Fran is six (6) months pregnant and it’s just not worth it because we certainly don’t want her to COVID-19.  We will look forward to 2021 Thanksgiving and the addition of our first grandchild.

It’s no doubt, we will remember this Thanksgiving for a long time.

I remind myself often, that even though it’s been a challenging time for our nation, I have many things to be thankful for; my family, democracy in our nation, friends and my health.

From my family to yours, I hope you and your family have a wonderful, peaceful Thanksgiving.

 

We Can Never Lose HOPE……………..

Thankful

Growing Old Is A Gift

Most people wouldn’t agree that it’s a gift to grow old.  If you have Huntington’s disease (HD) in your family, you probably would agree.  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  For more information go to:  http://hdsa.org or visit my author website at:  https://theresecrutchermarin.com 

Unfortunately, HD is in John’s family and his three (3) sisters inherited the mutated huntingtin gene and are gone from our sight.  Each year on the birthday of Lora, Marcia and Cindy, John and I always talk about what age they would be and what they would look like.  Lora died at age 41, Marcia at 49, Cindy at 54 and their mother, Phyllis, at 48.

Lora, Cindy, Marcia Marin

Through the years, our hearts have carried the loss of the sisters and is felt more intensely during the holidays and special occasions because we still want them to be with us.  We can never celebrate a birthday, Christmas, Thanksgiving dinner or just hang out. We miss even something so simple as picking up the phone to talk with them.  What I wouldn’t do to see these kindhearted, nonjudgemental women, who taught me about mindfulness, forgiveness, and unconditional love.

We Can Never Lose HOPE…………

Author Therese Crutcher-Marin