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Oct 5, 2017
Demanding Better Care
Healthcare is always a hot button issue. We often take it for granted. It always amazes me when I'm talking to a fellow Leukodystrophy family and they haven't heard of CHOP. We learned about CHOP a couple months after Jordyn's diagnosis. We had been seeing a local neurologist who diagnosed Jordyn and told us to "wait and see" what happens. They were not at all proactive in her care and tokd us we would be lucky if she lived a full life. As a child of someone who works in the healthcare profession, I refused to believe tjis was quality healthcare. I immediately reached out to Facebook groups to finds answers and get help in understanding this disease. I was told that a research study was taking place at the Children's Hospital of Philadelphia Leukodystrophy Center. Going there for the first time in February of 2016, I was BLOWN AWAY at the care we received. We were told that there is hope and "we are going to do everything we can to save your daughter." CHOP is a hospital we look forward to visiting. It's a place of hope, a place where you truly feel like family. the Leukodystrophy team is absolutely the best in the nation (in my opinion). They make decisions together about every child they see. There is no miscommunication and no blurred lines. They come together for the sake of every child they meet and make decisions, as a team, that are in the child's best interest. If you haven't done so, you really need to take your child to Philly. The care you receive at CHOP will no doubt pale in comparison to other care you have received thus far. Dr. Waldman and her team are absolutely incredible. They are some if the most compassionate people I have ever met!
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
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.
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.