Greg continues his mission to raise awareness for MLD

We are so proud of Greg’s continued efforts to raise awareness for MLD! We know that we are blessed that he still has a voice and can be an advocate for those that don’t.

Greg gave another speech to University of Maryland nursing students. He’s hoping to make them aware of MLD and also of his journey – with the hope that if they run across someone like him they will be able to help. He encouraged them to share his story with other students and professors – surely someone someday will work on finding a cure!

So many times Greg’s troubles were pushed aside or dismissed as being “behavioral problems” – he was having real struggles and wasn’t able to articulate what was happening to his body. We are convinced that as rare as MLD is supposed to be that it may in fact be more prevalent. We know of patients that were also misdiagnosed with schizophrenia or other psychological problems. Without awareness they too will be lost in the system.

Last month Greg spoke to Psychiatry students at Mt Washington Pediatric Hospital. This speech was also about awareness with an additional lesson of how to care for someone with a terminal illness. He shared his personal journey with MLD. He wanted them to know that just because he has been given a terrible prognosis he wants to be treated as being alive and with hope. He doesn’t want to focus on his demise. Change the focus on making life as enjoyable as possible. Focus on goals and life not death.

Greg had pneumonia in January and gave us quite a scare. Whenever someone with MLD is sick/stressed they experience a progression in disease. We witnessed confusion and difficulty walking and were horrified that the disease was rapidly progressing. Fortunately, after his fever broke, and we changed antibiotics he improved and the symptoms subsided. However he did not return to his baseline. He has had more trouble with walking – he stumbles a bit more and even fell down the stairs smashing into and through the wall one night. Although he was laughing and apparently “okay”, he gave us quite a scare!

Our physical therapist has been working hard to maintain as much flexibility and strength that his body will allow. He now wears a brace on his right leg to help elevate his toes so that he won’t drag his foot as much.

Fortunately . He amazes us with his courage and perseverance. He truly embodies his message of “never give up”!

We are searching always for viable research opportunities and pray for a breakthrough always!

Thanks to some good friends and his church groups Greg has been going to prayer groups, bonfires, hiking and even tried camping. He truly misses the socialization of his peers and is happiest when surrounded by people.

We thank you for your continued interest and support in his/our journey with MLD! We are blessed and we will never give up!