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Murad Mamedov
Feb 26, 2018

Guidance and support


Hi everyone!

I have a 2 year old baby girl-Mehri. She is premature and was born in 8th month of pregnancy. She started walking when she was 1.5 years old, but she is still not speaking, just pronouncing couple of different sounds every time. Before she started walking, she was walking by holding from walls. Her development is OK, or at least I think so. Although she was following children in her age a bit slowly, when she started walking she became active. She always tends to walk. She developed her own methods of dealing with problems. For example, when she has something that she wants to grab, as she cannot easily bend, she pushes the thing towards the wall and takes it. Overall the majority of skills were developed by her. On February 15 we had a consultation with our pediatrician according to concern on her right leg. Although she was walking, she was stepping on  her right leg a little bit harder. We were directed to neurologist and she told to take a set of physiotherapy. In addition , we were advised to make MR images of her brain, just in case. On February 19, she was reported with "white matter disorder"- leukhodsytrophy by radiologist. It was the first time I have heard about such kind of illness.  In countries such as mine, you can easily get different reports for one MRI. I decided to show the MRI to different radiologists. The first radiologist mentioned in his report that there is a significant decrease in the amount of white matter. The next one reported that there is a decrease in white matter between minimum and mid-level and future observation on leukhodsytrophy is advised. The third one reported that there are no signs of leukhodsytrophy.

As one who sinks holds on to even a single straw, I have sent the MR images to Russia, Turkey, Emirates, Germany and now waiting for reports. The report from neuro surgeon from Russia was a bit hopeful. He reported that I cannot see signs of this illness, but the report form Emirates claiming that there is an exact symptom of leukhodsytrophy, but the future observation is needed to watch how the child develops. I am still waiting for 3 more reports.

I am really worried and get very confused by these 5 different summaries of MRI data. The  another obstacle is that, both neurologists and radiologists in my country didn’t have an opportunity to experience and work with this kind of illness and that’s why they cannot put exact diagnosis. Or at least I hope so.

Dear parents, please guide me with future steps to clarify whether she is ill with this illness or not. I am really short of money father who is searching for right assistance and guide. I wonder if anyone can help me with the guidance. I cannot see symptoms in her behavior. Or if anyone who has experienced such kind of issue, please guide me to make sure whether she is ill or not. I can easily provide you with the different videos of her development  from different ages. I look forward to hearing from you. Please feel free to contact with me via email ( ) or forum. Thanks in advance.

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    Jul 20

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  • 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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