As most of you know, my wife and daughter tested positive for Huntington’s disease. They have witnessed the brutality that Huntington’s can inflict, and they have every right to curl up in bed every day and cry. But they don’t.
They get up and continue forward with what I can only describe as iron wills. They could throw a pity party, but they don’t. They care about their friends and family. They lift people up when they need it, despite knowing what their own futures hold.
As I think about how sad this makes me, it also makes me proud. I am proud that they are tough enough to carry on and soft enough to show empathy to the people in their lives.
I want to tell our daughter, Alexus, what an impressive young woman she is. Her resiliency will come in handy as she deals with her disease.
Until Alexus was 11, my wife, Jill, was a single mother. Jill will tell you she had a lot of help, but the truth is she was flying solo as a parent. Alexus never used that as an excuse. She didn’t whine about what she didn’t have and was grateful for what she did.
Alexus helped take care of her grandfather, who had Huntington’s. She will tell you he was her hero, but in reality she was his. She gave his life a higher purpose. She didn’t understand that, but she was patient with him, cared for his needs, and was a shining example of a loving granddaughter.
When I entered the picture, Alexus was excited. She was happy to have a dad in her life. Then I got a job in Illinois where we had no family or friends. We moved from Florida, where everything was familiar, and started a new life. It was hard. She had every right to be angry.
Instead, she embraced it. She made new friends, joined clubs, and became involved in school activities. She got good grades. When she was old enough, she decided that she should get a job. Once she was working, she continued to be involved in school and extracurricular activities.
As she began to think about college, she started taking Advanced Placement classes. She knew they would look good on her transcript, but she also understood that credits would save time and money. When she took the ACT college entrance exam, she scored one point away from perfect.
She had her choice of colleges. She researched schools that would work best for her and would be financially logical. She made spreadsheets, and we visited campuses. She was accepted by Massachusetts Institute of Technology (MIT), her top choice.
That’s right; she got in — not that I’m bragging. She worked throughout college, joined a sorority, and held summer internships. Four short (for us, not for her) years later, she graduated with a degree in mechanical engineering and a minor in healthcare policy from MIT.
She had a job lined up when she graduated and soon found an apartment. Now she has a second job writing a weekly column for BioNews Services.
I am a proud dad, but I also am a big believer in Alexus’ ability to overcome obstacles. Her grit will serve her well as she deals with Huntington’s in the years ahead.
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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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