The support of extended family helps us battle Huntington’s disease
After my wife's diagnosis, relatives stepped up to help our daughter cope
My wife, Jill, is lucky to come from a loving family. Her relatives are the kind of people who would help anyone in any way they can. I’ve been blessed to be welcomed by them.
After Jill was diagnosed with Huntington’s disease (HD) in 2018, our daughter, Alexus (“Lexi”), was shaken, as she and her mother have a special bond. Jill’s family calls her LJ for “Little Jill,” and Lexi loves being like her mom. I sometimes think they communicate telepathically because they can understand each other without using words.
When Jill was diagnosed, Lexi was a junior at the Massachusetts Institute of Technology, and when we told her, something broke in our daughter. It made sense. Lexi grew up with a grandad — Jill’s father — who exhibited Huntington’s symptoms that worsened over time. And when HD runs in your family, you find out pretty quickly that biological children have a 50% chance of inheriting the disease from a gene-positive parent.
Jill and I knew that Lexi needed to grieve in her own way. Usually, she’d vent to her mother, and while Jill would have been fine with that, this time, Lexi needed someone else.
In this case, that ended up being Jill’s wonderful cousin, Rich Jones, and his amazing wife, Susie.
A much-needed connection
At the time of Jill’s diagnosis, Lexi, like many college students, was undecided about what career she wanted to pursue. Although she was on track to get a mechanical engineering degree, she’d started considering law school, believing that a career as a patent lawyer would play to her strengths. But Lexi is someone who needs to experience a job to know if she wants to do it. She’d interned at several companies, but how do you find a patent lawyer to learn from as an undergrad?
The answer is simple. You have a nana — Jill’s mom — who shares your thoughts with Rich and Susie.
Susie was thrilled to hear about Lexi’s plans. An attorney with an engineering background, Susie is now a founding and managing partner at a firm that specializes in intellectual property law in Washington, D.C.
Jill knew that Lexi needed to reach out to Susie independently. My wife wanted her to take charge of her future and know she could do anything she set her mind to, so Jill stepped back and let Lexi make all the plans and decisions.
The next thing we knew, Lexi was interning at Susie’s company over winter break, several months after Jill’s diagnosis. Susie and Rich insisted she stay with them for several weeks while doing the internship.
Lexi loved every minute of her stay. She was cared for, loved, and fed. What more could a college student want?
The trip was what she wanted, but it also ended up being just what she needed.
Finding a safe place
Lexi needed a safe place to talk about HD and the devastation it had brought to her life. She needed to be with a family who understood this terrible illness but wasn’t directly touched by it. She needed Rich and Susie and their two sons.
After her time with them, Lexi came back a little stronger. Our daughter has always been a force of nature, but when she learned that her mom would suffer like her grandfather, she shut down. After a few weeks with the Joneses, she seemed less closed off.
One day, I hope Lexi will be open with us about her sadness as HD continues to affect Jill. But even if she’s not, we know that anyone in Jill’s family will listen to and support her in a heartbeat.
As for Rich and Susie, Jill and I will never be able to thank them enough for the hospitality, love, and care they showed Lexi when she needed it most.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Fran Carey
My husband was diagnosised with this horrible disease about 7 years ago. He manages pretty good. We had lots of "trauma" when we began to tell our children and families. Arguments and hurt feelings came out. No one seemed to understand what my husband and I were dealing with. Finally I sent an "apology" letter to my husbands family and invited them to our house for the weekend. They came and we had a good time, but I expected them to see what was going on. And perhaps to ask some questions. One sister in law said to me weeks later, that Bob was not very engaging the entire weekend. Never once has one of them called me to ask how he is doing, but contrary when they speak with him or see pictures of him, they state he sounds and or looks good. (even though he is sitting in a wheel chair, which is new to them). I am hurt for him, for us, we feel very isolated from them and it hurts.
Carlos Briceño
Fran,
I am sorry for the reaction you received, and I hope that columns like ours will help the HD community understand the despair ignorance can bring. We hear stories from people in our shoes, and I am sad to say that reaction is not uncommon with families. Jill loves to say we are only as sick as our secrets and just because we don’t believe we have something, doesn’t make it true. I hope that one day, you will be able to share your struggles with all of your family.
I try to remind people, as hurtful as it feels, most people don’t ignore the disease to hurt others. They do it, because so much of what they were raised with was bleak. Even Jill was of the mind, ignorance is bliss because that was what was drilled into her head by medical professionals. That advice hasn’t changed very much over the years, so keep up with trying to educate those around you.
I also suggest joining support groups if you are able. It’s helpful to have people who are willing to talk openly.
Ellen Eaton
Thank you for having the strength to share this ...... brings tears to my eyes...... the deep sadness.....
Your articles are concise and easy to read and speak volumes - This would be a most difficult journey with out the help, support and love from extended family members...........
Carlos Briceño
Thank you for all of your kind words! I am sorry the sadness all of this brings to you, but I am happy what we do is making people feel less alone. Writing a column weekly takes its toll but I feel that I have been so blessed with support, and it's my job to do that for others.