Bella

Bella Matthews

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Bella was born on July 19, 2006. Her favorite color is pink. Bella loves to read! Mainly fantasy stories. She also loves movies, travel and swimming. She was able to swim very well at a very young age and used to love swimming with a mermaid tail. She’s always smiling. She loves to travel to see different places. She had her Make-A-Wish and stayed at give kids the world village. She loves to go skiing with her family. Amazing: Bella’s ability to be positive has always been a part of her. She was the most positive independent spirit as a younger child and even in the face of JHD she remains positive and doesn’t let it get her down. We learned that Bella’s paternal grandmother had HD before she was conceived. We didn’t know much about it other than the family’s experience which was that if the disease was passed on the symptoms would possibly show up around 40 years old. We knew that Bella’s dad had a 50/50 chance of inheriting the disease so we set out on a mission to get him tested. Doctor’s offices with in 100 miles of where we lived acted like we had the plague when we mentioned our interest in testing. We couldn’t get any information and the internet wasn’t the wealth of knowledge and connection that it is now. Because Bella’s dad was having some migraine issues we spoke to his neurologist about HD. He assured us that based on a recent brain scan they had done, that he did not have HD. He said he would have seen it in the scan and he did not see anything. With that information and armed with the idea that IF for some reason he really had HD and IF our child inherited the disease there would surely be a cure by the time that child was nearing 40 and would be symptomatic, we deiced to move ahead with our plans to start a family.

Her dad was having more and more issues with visual disturbances, migraines etc. so HD was something we continued to be concerned about despite the brain scan and the words from his neurologist. We ended up booking several appointments at the Mayo Clinic in Arizona in hopes of getting information and answers. We left with one piece of advice; get long term health insurance before getting tested. No direction on where to get tested, no additional information, nothing. We were no better off than we were before. All we could do was focus on our daughter and hope for the best.

Bella was such a happy baby, and grew into such an independent, smart, sassy toddler and little girl. When she started school everything came very easy for her; she was social, learning at the top of her class, and thriving.

Eventually Bella’s dad and I divorced. Without an HD diagnosis I didn’t understand what was going on, why his personality was changing and his behavior was so erratic. With the diagnosis and now, looking back it’s obvious that all of the issues that led to our divorce were HD symptoms.

I remarried and made a new life for myself and Bella. She has a stepdad that adores her. Of course she’s maintained a relationship with her dad and his family. As one diagnosis after another were coming in on her dad’s side I really started to worry and Bella. Around 9 or 10 years old she started to withdraw socially. Then her grades weren’t as good and she was forgetting things more and more. I turned to the internet for answers, that’s when I discovered JHD. I’d never heard of it…and I somehow knew this was the road we were heading down. I cried and searched frantically through tears for more and more information. I searched for articles on cures or treatments for HD. I searched for names of people involved in research that might be able to help us.

We spoke with her pediatrician. He had very limited knowledge of the disease and assured me she could not possibly have it as it only affects males. I knew this wasn’t true because Bella’s dad had inherited it from his mother. He ordered the blood test at a local lab to ease my mind. I didn’t tell Bella what she was being tested for so when we showed up to the lab I left her in the car to go in and make sure everything would work out. They turned us away stating they couldn’t/wouldn’t perform the test. The pediatrician then referred us to a child neurologist about 3 hours away. The neurologist diagnosed her with depression and prescribed medication. He also ordered a MRI. The MRI showed what he believed to be the beginning of HD in her brain. I was devastated and cried the whole way home. Of course Bella still had no idea what was going on so we suffered behind closed doors. Eventually after the neurologist spoke several times with the lab and our insurance, we were able to get the blood test that confirmed Bella’s JHD diagnosis. She was just over a month away from her 11th birthday. CAG of 74.

We waited to tell her about the diagnosis until she was a couple of years older. And even then it was only because not only was she seeing a decline in her ability to learn and feeling bad about herself, but in our small community word had gotten out and we didn’t want her to hear it from anyone but us.

I told her that JHD was to blame for her struggles in school, it wasn’t her because she was still so smart! I told her that there wasn’t a cure for the disease, but that I would fight for her, be by her side, and do everything I could to get her any type of help that might be available.

To this day that’s what we’re still doing! We fight for Bella and for the JHD community to bring awareness, understanding, and hopefully access to a treatment or cure.

Advise: You’re not alone. There will be days you can’t face the world much less anything to do with HD/JHD and that’s OK! Allow yourself to feel the emotions. If you don’t laugh, you cry, so try to laugh at the struggles as much as you can.

Motto: We’re in this together