People say to me all the time, "I dont know how you do it," "it" being the special needs life. "It" is all I can do. There's no cure for Alexander disease so the only way we can fight this is therapy, therapy, and more therapy so we run ourselves ragged trying to see the specialists on top of regular pediatrician appointments and making sure Jordyn gets to school 4 days a week on top of that. It's exhausting and has taken a toll on my body, my marriage, and my friendships. It has changed me and our family dynamic, but you know what? That's okay! As tired as I am, I see how much it's helping Jordyn. She's defying the odds and shocking doctors and everyone she meets. She knows how special she is and knows how hard she must continue to fight. It makes no difference to her because it's all she's known. I've learned that there are two types of pwople in life: those that complain about their situations and do nothing to better themselves and those that keep pushing forward, complaint or not, to better their situations. I can't sit idly by and watch things happen. I have to jeep pushing forward for my family, and more importantly Jordyn. She needs to see that her parents believe in her and have hope in the future. She needs to see us fight for her so I continue to spread awareness every chance I get. We fundraise by doing 5ks, selling shirts, raising money for Elise's Corner and The Calliope Joy Foundation. We do all we can to tell EVERYONE about the foundations and people who have helped us and about Jordyn's disease. in just a year, we have over 800 followers on her page. I say all this to give you hope. Get out there and do something. Keep moving forward. We can't change the past so all we can do is keep our eyes and hope on the future. We have an amazing community to lift us up and help us through the difficult times. We MUST join forces and fight to find a cure for ALL leukodystrophies!
3 days ago
Adult Refsum Disease is an ultra-rare Leukodystrophy. Global DARE Foundation was recently founded to support individuals with Adult Refsum Disease. Our mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. You can find out more about Adult Refsum Disease at our website: https://www.defeatadultrefsumeverywhere.org/ We are hosting our first conference in London on May 15, 2020. We can use help finding more patients. Please share with anyone that may benefit. We will also be at the United Leukodystrophy Foundation conference in June.