Challenging times for many chronically ill people

The pandemic has made for some challenging times for many chronically ill people. Blessed to have access via telehealth when in person is not safe or available.

Greg continues to muster forward! Thankful for our community! Please continue to lift our Leukodystrophy families in prayer!

Baltimore Style Magazine:

We’ve had to adjust to a lot of new norms since the start of the pandemic, and one of the biggest has been virtual medicine. Baltimore mom Pam Bennett whose son, Greg, was diagnosed with Metachromatjc Leukodystrophy, talked with us about the benefits and challenges of their telehealth experience. Greg’s Challenge

“Legatron” – Greg’s new device to help with swelling

MLD comes with all kinds of unexplained symptoms.

With the myelin degradation in the brain being somewhat random, signals to the rest of the body are blocked or misdirected. Greg has had severe swelling in his feet and ankles since May. Doppler studies, ultrasound and bloodwork for kidneys, heart, thyroid are all normal; so the doctors are stumped. MLD seems to be the only logical explanation. Thanks for continuing to lift Greg and his leukodystrophy family in prayer.

Where there is a will there is a way!

️Greg gave his speech via zoom to Johns Hopkins Medical students today.

Greg was in the hospital Monday and when they admitted him he was most worried about missing his speech today!
Although he was able to teach 10+ people at the hospital – today he reached over 100 students! He hopes they will remember him and his story so that they can help a future patient with a Leukodystrophy, maybe even MLD. It was a long 5 years trying to get his diagnosis. Now that MLD is on their differential, perhaps one of these future doctors can help another family avoid prolonged misdiagnosis. Or as Greg hopes – find a CURE!

A HUGE thank you to Dr Anna Maria Wilms-Floet for championing Greg’s mission to raise awareness for MLD!

Greg enjoys sharing his story with medical professionals.

Many thanks to Professor Ben Canha in allowing Greg to teach his nursing students about MLD and Leukodystrophy! Greg really enjoys sharing his story with medical professionals with the hopes that they help him spread awareness too. Blessed that many of them took his challenge and wanted his “muddy bracelets” – a conversation starter for sharing with more people!

Greg is working hard to rebuild his core strength and leg muscles

Greg has been working! The Baclofen pump has been great to reduce the clonus but has also taken away his muscle tone and strength. Trying hard to rebuild his core strength and leg muscles. MLD affects the transmission of information to all the muscles and his hips and leg muscles are shortening and very weak. He finally received his new walker which really helps him with stability and allows him to walk faster. Praying it helps him to build up his muscles!

Greg has a chance to use the “walking robot!”

Download and watch the video.

Greg had a chance to use the “walking robot” today!! We are so blessed to have Kennedy Krieger “close” by!! The Baclofen pump isn’t doing as much as we thought it would – he’s had to work hard to build his muscle strength to make up for the tightness that the Baclofen takes away. Hoping the robot will help Greg increase his stride and improve his gait.

Continue the prayers please!

Happy 23rd Birthday Greg!

Greg celebrated his 23 Birthday yesterday! Thank God for giving us another year! Greg always says he’s an “anomaly” – and for that we are grateful and blessed! He recently told some nurses, “I outlived my expiration date and I’m not even moldy!” Love his spirit and courage!
Continuing to raise awareness for MLD!