How Support From Extended Family Benefits HD Caregivers
Last November, our daughter, Alexus, who is gene-positive for Huntington’s disease (HD), got married to a wonderful man named René. The civil ceremony took place in a restaurant in Boston. It was short, sweet, and relatively uncomplicated — exactly what the newlyweds wanted. They also wanted a small wedding party, so only 12 guests were present.
My wife, Jill, who is also gene-positive for HD, has a large extended family. They love Alexus, so naturally they wanted to meet her husband and celebrate their love.
Jill’s mom, Edwina, asked them if it would be OK for her to host a little reception for them near her home in Pennsylvania. Alexus and René were touched and agreed to a little family get-together.
The bash my mother-in-law and Jill’s other relatives threw last month at a winery for the now not-so-newlywed couple reminded me that René and I will always have support when my wife’s and daughter’s HD symptoms worsen.
One of the many great things about Jill’s family is that they are fiercely loyal and kind. When I first met them, they accepted me with open arms and treated me like I’d been a member of the family for years. I love knowing that, and I love them. I love how much they do to support and celebrate one another.
When Jill’s mom asked to plan a little party for Alexus and René, Jill said to me, “There will be no ‘little’ party for them. This is going to be big. My family doesn’t understand little.”
Jill sure knows her family well.
Her mom, along with several other family members, morphed into the world’s greatest party planners. They scouted and found a winery with a live band, invited relatives who live nearby, and ordered enough food trays to feed a small army.
Jill’s cousin Lora — whom Jill refers to as a “walking and talking Pinterest board” because she’s supremely talented and crafty — did all the decorations for the tables and helped organize the food and drinks.
Her aunt, who for years has made cakes that rival any found in your favorite local bakery, created a yummy two-tier confetti cake with beautiful icing. Jill’s mom ordered special invitations that had a picture from Alexus’ engagement photo shoot. Edwina also made sure there was a poster-sized photo of the happy couple on their engagement day on display.
Jill’s family shared this gigantic outpouring of creativity and generosity because they love Alexus and wanted René to feel welcome, as he had never met any of these family members before.
The party was a huge success.
The day was perfect, the weather was beautiful, the grounds of the winery were magnificent, and the band was great. (They played so much ’90s music that I felt like I was back in that decade.) The food was delicious, and many people showed up from both sides of Jill’s family.
After we left the winery, we went back to Jill’s aunt’s house, where we continued to eat, talk, laugh, and simply hang out with one another. I realized that René now has experienced what I have known for years: We are part of a family that will support and love us in exceptional ways. They will be there for him when Alexus starts showing symptoms of HD, because that’s what Jill’s family does. Their big hearts don’t allow anything less than that.
When family members are stricken with a rare disease, like Jill and Alexus have been, caregivers will need a lot of help and support. René and I are blessed to be married to Alexus and Jill, not only because they are wonderful women, but because their extended family makes it seem like we have won the lottery twice.
From left, Alexus Sorina, Edwina Jones, and René Sorina smile at the wedding party. (Photo by Jill Briceño)
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.
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Comments
Kathy Ho
I cannot tell you how much I look forward to these posts. For me I call it HD in real life. I am gene positive with very late onset at 64. I appreciate how lucky I am that I’m be able to live alone and to have made it as long as I have. I just retired a month ago.Who would’ve thought.That’s nice to read the real life perspective and rather than all the other here’s how we’re going to save you. I am single and live alone. The future looks very dicey. I am lucky enough to have a great son. But after having gone through this with my mom who died quite some time ago and know it’s not going to always be easy. It is nice to have a human perspective. Thank you again.
Carlos Briceño
I am touched by your words. Thank you for sharing your story. It is such a difficult disease since most people who have it also watched their loved ones suffer from its devastating symptoms. I hope that you are able to find a community for support. Jill says every day that HD research is so much more advanced then it was when her father was alive. I hope that our children won't ever have to experience the decline of their mothers.
marisol lomas
Really appreciate the information provided. Congratulations on your daughter’s wedding. My brother in law and several of his family have either developed the disease or already have passed away. Not having kids my husband who is 60, who has no symptoms decided not to test for the gene. However, I know there were several studies working on a treatment that can start progression , I read something about this on your newsletter, could you tell me where I can find out more about the progress of these studies? Please keep up the good work . We need people like you
Carlos Briceño
Thank you for sharing your story with us. I am happy that your husband has reached 60 and has not started showing symptoms. I am sorry for your losses and hope that there will soon be a cure. The HDSA website has a wealth of information. If you go to hdsa.org there are five tabs in blue, for information about trials and so much more, click on the tab labeled "HD research. I spent an entire day reading about HD on their website.
Hala Hall
How fortunate to have a large family to gain support from!!!
Sadly, many HD families have lost half to three-quarters or even more of their loved ones to this heritable disease, that strikes generation after generation. Have a friend that had six boys, five have HD
Carlos Briceño
We are so very fortunate in so many ways. That's what gives Jill the motivation to continue with our column. The more the HD community supports each other, the better off we will all be. At the end of the day, a family doesn't have to be blood. Finding support is an important part of tackling HD. Talking to a social worker at an HDSA Center of Excellence is a great way to start.
Paula
My husbands family approached the disease a little different.They hid it and then shunned the members who got HD
Carlos Briceño
Thank you for reading our column. I am sorry to hear that your husband's family behaved that way. I hope that families will realize not talking about something won't make it go away. At one point, people didn't speak about cancer. As people started to learn more about it, it became less taboo to talk about. I believe that HD will eventually be that way soon.