As many of you know, I have been planning a dystance4dystonia walk for a while now. The day has come and gone quicker than I would have liked but it was a very fun day. I am very proud of myself and very happy to announce that we raised right around $5,000 towards finding a cure for dystonia. We had about 60 adult walkers and close to 20 children there. There were 5 people (including myself) with dystonia and one mother of a girl with dystonia who was unable to attend. It was a gorgeous day and everyone seemed to enjoy themselves. I am hoping to raise atleast double this next year. I just want to say thank you to the YMCA for letting me host the event there. I have worked at the y for 12 years so everyone knows my story and they were very supportive of me. I also want to thank my family who helped me through everything. Not only did they help plan this walk but they were by my side every step in my life as I struggled to find a diagnosis and then they were there holding my hand as I went through two brain surgeries. I want to thank my amazing fiance for his love and support, and my beautiful daughter for giving me the strength to fight. I want to thank the families who donated and came to walk from as far away as Boston. There was one family who I dont even know who donated $500. I just cant get over how generous people are. I want to thank my very good friend Bill, who I havent seen in a long time and showed up to give me his support and donated $300!! I want to thank my friends who helped set up, clean up, register people, sell raffle tickets and get donations for this special day. My aunts, uncles and cousins were more supportive then I could of ever asked for and I cant thank them enough for all they've done. Also, thank you to everyone who donated baskets, water, fruit and anything else! Overall, people were just incredible and without all of their help, it wouldnt have been so successful. I also want to thank the Dystonia Medical Research foundation for giving me this amazing opportunity to promote awareness and to raise this money to find a cure! They helped me plan this whole event and were very helpful through everything! I am very pleased with how the day went and I am so excited to do it again next year!!!
I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc
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