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I am very excited to see the telethon again. I’m a huge supporter here in the Pacific Ocean. We got not much to give being that we are hit by this pandemic ontop of being economically challenged at an everyday life. Trying to live and support our kids and ourselves to being able to make ends meet is a very hard lifestyle here in the state of Hawaii. We no longer have any muscular dystrophy organization but the regular neurologist in our main hospitals. Which I know of just 2 hospitals . I had to move from my home the island oh Kauai to the city of our islands also the main and only island close to offering help and security for the sick an disabled people of Hawaii. Called Oahu, Honolulu. Or most of you know it as Waikiki. We have no idea where to turn to those of rare diseases like mines. LGMD. Diagnosed with this for 18 years never been to anything mda related. Our programs an offices was closed due to financial and economic issues. June of 2019. I’ve tried to reach out an get some funds throughout this time in helping of fundraising or walkathons. But our disease isn’t as popular as pancreatic or breast cancer. Etc. I wasn’t abled to even be given straight up answers about my disease an what was it or caused it took them years an 3 harsh an painful biopsy’s until finally in 2005 they finally performed the last biopsy and put the results and researches together then did I have a solid Diagnosis under my belt to begin whatever falls through my state given medical. Which here in Hawaii is corrupted to where I taught for my care. I appealed and grievances my legal rights and the rightful care for me. I’m still doing it as we speak. Not until recent did I find out thanks to google searching and Facebook social media’s did I find my way. Now an it’s only been months I have a bigger text book in my head and I’m requesting referrals through my neurologist or pcps prints of websites an information to hand them and helping them help me. For 12 years I’ve always wanted to help others with any care or Information they needed due to my past experiences. I don’t wish it on anyone especially my fellow people with muscular dystrophy’s. In the state and around the world. But I’m not financially fit to dish out cash being to ask apply for assistance regardless what it is here is hard. I been applying for years an haven’t got help with any housing issues. HUD or section 8 we like to call it here. Because I’m not a Hàwaiian blooded but just a local born and raised doesn’t give me anymore then those in the streets living day to day with what they got. That’s who I am just with a family whom knows to hustle regardless what our situation is to have food an a roof over our heads.
Not having a support group or mda here leaves us alone for our self. But that never stopped me. I’m still smiling and out to help others with any sort of medical disability and is given the same hand as I do. Some are worse. I pray for those. I’m a very addicted now finding social media and would love to share some of my God given abilities such as singing and voicing out to others nonstop I’m sharing things from all muscular dystrophy related a lot. Everyday so far I’ve given a song or two to everyone due to our Muscular dystrophy awareness month. I’m going to have a feed on my very 1st day of celebrating LGMD day on the 30th and have shared numerous things on an tagged due to our Muscular dystrophy awareness month. As well as our telethon that we been graced with next month.
Do find me on Twitter on Instagram and mainly Facebook. Glee DeRuiter or search can find if you can search Glendalee DeRuiter aka Gleelaureta (glee). I’ve got many songs recorded and shared for our rare diseases. Hope everyone will have the time to look at my profiles. I’d love to share on here but I don’t know how to upload pictures or videos songs on here. So I’m inviting you all to find them on Fb. It is sung to you all my fellow MD fighters. Also their loved ones. Until next time see u on the web.
