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Nov 19, 2017



I'm very open and honest about how busy we are and how much of a mess I am, but the truth is, it's so much more complicated than that. I'm usually very positive and, truthfully, it's exhausting. Some days I fake a smile just to get through. No one understands the pain of raising a child with a terminal illness unless you are there too or have lost a child yourself. It's full of ups and downs. The ups are so high but the downs are so low. There's no real happy medium. The "happy" medium is a numbness that I can't escape. It's every day. The best picture I can paint is that I feel as if I can't swim and I dive in the water to save someone drowning only to find myself drowning. I can't yell out for help even though there are many people standing around the pool who could help me. Nothing can possibly take away the pain I feel when I look into my daughter's eyes knowing that if nothing is done, I may never get to watch her walk down the aisle. I may never get to see her go on her first date or play sports that all the other kids her age are doing. We've built our lives around the uncertainty that is tomorrow and we live very much day by day. There are no plans made beyond a week's time because, the truth is, we don't know where we're going. We grasp onto the hope that a cure is coming, but that's all it is - hope. Faith keeps me pushing forward even though I feel as if I'm drowning. Trying to keep everything organized is becoming more and more of a task with every additional specialist we add to the never ending list of doctors, therapists, and specialists we see. We are running constantly to therapies and doctor's appointments instead of games and fun get-togethers with friends. I am envious of those who have kids running and playing sports. I'd much rather be taking Jordyn to games than therapy. I'd much rather see her running alongside her peers instead of struggling to keep up. I pray that one day Jordyn finds someone who will walk alongside her and wait for her. I pray that she'll find someone to lean on who will understand all she's gone through to be this far. I pray that some day there will be a cure and that we can begin to plan and look ahead to the future.

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.

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