Being a Caregiver for Juvenile Huntington's Disease with Marie

Champions for HD Podcast

**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Welcome back to the show. I first want to apologize for the delay in episodes. I ended up coming down with COVID a few weeks ago and I had it pretty badly. Thankfully I am feeling much better now, just fighting off severe fatigue, but I hear that can last a while.

Today’s guest really hit me in my emotions. Marie and her son Josh have been completely on their own for years now. Marie’s husband suffers from Huntington’s and has been in his later stages for a while now. Unfortunately he has distanced himself and cut off communication between Marie and Josh. Josh recently was diagnosed with Juvenile HD and it has been emotionally, physically, and financially taxing on them.

They live alone and have no outside support from either side of their family. When they reached out to Champions for HD through our help forum, she expressed they were in dire need of financial assistance due to having to live out of a hotel. With the pandemic, the traditional housing resources for these situations are shut down and on hold.

Thanks to your donations, we were able to raise $1,300 for them to help them pay for their entire next month of living expenses.

Despite these difficult circumstances, they both continue to fight. Marie is focused on being the best care giver she can to Josh and their story really hits the soul.

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