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Sep 3, 2017

Never Give Up


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!

New Posts
  • wrwoodar
    Jul 20

    My son will be 3 yo in october and was diagnosed with spastic diplegia/CP about 2 months ago. Peds neuro ordered MRI to look for signs of CP and there turned out to be white matter injury worrisome for metachromatic leukodystrophy. He has always met his milestones aside from gross motor, primarily with balance and unsteady gait when walking. He does not jump or run but he seems to climb well. Fortunately at this point, he has not shown any regression of skills. Genetic tests are pending. If the tests are negative, has anyone ever encountered being told their child has leukodystrophy and it actually turned out to be CP? Thank you for you responses and support and God bless
  • April Garcia
    Jun 3

    I received a phone call 2 weeks ago from the Seating and Mobility Clinic asking if Jackson (our son) needed to make an appointment to have his adaptive stroller refitted. I told the representative that Jackson had Krabbe Disease and that he wasn’t with us anymore, that we had not been able to be with him since October of 2016. The representative apologized and said “I hope he is getting the care he needs” and we ended the call. Once I hung up I realized that due to my brokenness and inability to verbalize exactly where Jackson is I lead the representative to assume due to the Krabbe Disease that we were no longer able or willing to care for Jackson and that he was being cared for by someone else. I immediately called back and luckily got the same representative and explained that Jackson transferred to heaven and even though that information would not change anything within their company that I could not allow any misunderstanding that we ever gave up on Jackson or that we voluntarily let him go. The representative gasped with new understanding and offered heartfelt condolences. I hung up and let loose a silent soul shaking cry for 2 full minutes before returning back to work.
  • Maria Kefalas
    Jul 29, 2018

    Most days, the grueling routine of caring for a child with leukodystrohy takes a toll. But then, there are organizations and people who can make this journey just a little easier by seeing the beauty of kids with leukodystrophy and welcoming families into their home. The Philadelphia Eagles (and the amazing Julie Hirshey, the director of community relations for the Eagles) have been champions for kids with leukodystrophy and the Calliope Joy Foundation from the very start. We are so proud to host our biennial gala in 2019 at Lincoln Financial Field. And, we were thrilled to learn that the Eagles were hosting our friend Kendall, who has metachromatic leukodystrophy, at this year's Eagles training camp. This photo sums up the amazingness that the Eagles make possible for families in our region. We could not be more proud to work with this incredible organization. Thanks to Cindy Williamson for sharing this photo. Yah, that's Super Bowl MVP Nick Foles with our friend Kendall and her mom Cindy and pop-pop Stanley.

Together, We are stronger

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