Lizvet was born a healthy 9lb 2oz baby girl on July 4th. Since the beginning she was very advanced. Walking before her 1st birthday and potty trained by 1 1/2. She was able to carry a full adult conversation at 28yrs old. Towards the end of her kindergarten year her teacher expressed concern about Lizzie’s learning abilities. That was the start of our journey. She started testing at school and said they had to classify her as mentally retarded. I was so mad and offended. So I started taking her to the Dr to run tests. After all possible testing was done they asked about our family history. My husband’s mother had passed from HD when she was only 39. Although when the conversation about her would come up his response was always “she got sick and died.” I always assumed she had cancer. So when I was unable to tell the Dr what kind, I had to go ask his family. That is when his sister told me about Huntington’s Disease. So I went back and told the Dr what I found out. They decided they wanted to do a few more test before they tested for HD. Five years later, 5 days before her 10th birthday, we got the news that she was positive for JHD. We made every effort to do what she wanted to do. She continued in regular school but was in a special class with her own aid who stayed next to he all day. Then when she was transferred to another school that was 30 miles away. This turned out to be the best thing for her. When Lizzie turned 15 we celebrated with a Quiñcenera. A Mexican coming of age tradition. This was one of her last big events she was able to really enjoy before getting too sick. This is the time that Dad started to become symptomatic. He took the test and confirmed he too had HD. She had a Mic-key button feeding tube put in. After that she slowly gave up eating with her mouth. She had two very bad choking episodes. Then she started dragging her left foot. Then she would lose her balance as she leaned too far forward. She started using a gate trainer. It help for about a year. Then she had to use her wheelchair and finally lost her ability to walk. But this still did not bring her spirit down. She has been a great support for Natalya also. Always there for baseball and dance practice. Even now that she has been placed on hospice. We live our live as they have HD, HD doesn’t have them.
She did things I never thought she would. She played baseball and even joined the dance squad. We all did our best to keep her mobile. She has a infectious smile and a corky sense of humor. Everyone that had the privilege to work with her just fell in love. She loved spending time with her little sister. They spent many afternoons playing Barbies and in their playhouse. Lizzie and Natalya loved to be together all the time. They even insisted on sharing a room when there was still two other empty rooms in the house.
April 2, 2019 Been up for over 24 hrs with Lizzie. Had to bring her to the ER. Was told they were going to transfer to Sacramento. Two hrs later they said no. Then once again 2 hrs later we were going to be sent to Sacramento. After waiting 3 hrs we were told she was not going to be transferred after all. We were staying and just need to get a room for her. After 18 hrs in ER we finally get admitted. Now I am being told she will be reevaluated "in the morning" to see if they want to send her to Sacramento. 🤦♀️
April 2, 2019 Update on Lizzie- She is a little better. She still has seizure like episodes. She had blood and urine test, x rays, EKG, EEG, and a brain scan. Everything looks good with a small hint of bronchitis. Dr was leaning toward meningitis. But since her heart rate is elevated now they are focused on her heart. Hopefully they find what is wrong. April 6, 2019 2nd update on Lizvet: She is doing a little better. She has aspirational pneumonia. They been giving her vancomycin. Which seems to help. But now her heart is beating fast. Her rate is at 145-150. She was given metoprolol. But I don't see that that really helped. So now we continue to wait.