February is rare disease awareness month; so isn’t it fitting to update Greg’s blog this month. Greg’s mission is to raise awareness for Metachromatic Leukodystrophy (MLD). He wants to be famous. He wants to be a “Face of MLD”. The children and young adults that are on this MLD journey need a voice and he wants to be that voice. How amazing and courageous he is!
We’re happy to report that we have passed the two year mark of his diagnosis! Thanks be to God he has not followed the course that was predicted for him. We were told that he would “be in a wheelchair in 2 years and gone in 5 years”.
Well….he’s still walking and although it can be laborious and slow and he stumbles….Greg is still walking!! God willing he will continue to defy the odds! Greg continues to work hard in physical therapy and his therapist, MJ is one of his biggest champions. Stretching, land exercises, and water therapy take up several of his hours twice a week.
It is there; at therapy that Greg has the biggest opportunity to share his journey and his version of MLD. So many other patients and staff have become prayer warriors for Greg and others fighting MLD. He is raising awareness one “pool buddy” at a time!
Greg and our family were blessed with a Make a Wish trip in November. Greg’s wish was to see the Mayan ruins in Mexico. We were given a trip, via a cruise to Roatan, Belize, Costa Maya and Cozumel.
The ruins were amazing and the countryside was beautiful; but it was the people that Greg was most happy with. We had made shirts for Greg’s Make a Wish trip and they were a conversation starter….raising awareness! We shared a table at dinner with two younger couples from Florida and every night at dinner we would share stories about our day and we would laugh and laugh and you could just see Greg “lighting up” every night.
We met people from other states and other countries. Our wait staffs were from Romania and Malaysia, the Make a Wish coordinators were from Canada and Ireland, and our room attendant was from Indonesia.
There are people from around the US and the world that now know what MLD is and they have joined us in prayer and support. We even had people pray with us on the ship. We have to say that the people from the Make a Wish Organization and Royal Caribbean Cruise Line were incredibly generous and made us feel like royalty!
In December we decided to make a change in Greg’s therapy. We felt that he needed some positive behavioral modification and goal setting rather than dwelling on the inevitable progression of MLD. He now sees a psychologist at Mt. Washington Pediatric Hospital who is committed to helping Greg find purpose and happiness in his life. He agrees with us on preserving and enhancing what Greg is able to still do. He has embraced Greg’s desire to spread awareness for MLD and has asked him to give a speech to his psychology students. A chance for Greg to teach the medical community what it’s like to live with MLD as a young adult.
Greg has the late juvenile form of the disease which presents and progresses differently than the infantile form. He has physical limitations for sure but he struggles with the psychological impacts more.
To be able to educate this group of future doctors is a chance to save other kids from dealing with all the struggles that he did. If only Greg had been diagnosed sooner; could we have saved him from MLD? No, but we could have made sure that his quality of life was better.
Perhaps the years of bullying and feeling different could have been thwarted altogether. Wayne likes to say that our medical society is content with looking at things from one viewpoint; “just because you have a hammer everything looks like a nail”. So many of Greg’s “symptoms” were explained away as behavioral or psychological issues; it wasn’t until we demanded an MRI that things were understood.
We have found in the MLD community that there are many older kids that struggled with risky behavioral/psychological problems before they were diagnosed with MLD. We’re not saying that every child that presents with these problems needs an MRI. But we do feel that the medical community should be better at ruling out all possible physiological problems before they label a patient with a psychological illness. A complete noninvasive neurological exam revealed so many problems that Greg had. Perhaps his insight can help these young doctors and their colleagues see things in a new light; it might not be a nail!
Another exciting opportunity Greg has been blessed with is the chance to tell his story to a reporter for the Carroll County Times. Greg and family and his Neurologist at Kennedy Krieger were interviewed; and Greg was photographed at physical therapy, church, and at home making his bracelets and with his beloved plants! The reporter said, off the cuff, that maybe the article would be picked up by the Associated Press. Greg only “heard” that it would; so he’s looking forward to his moment of fame!
Greg continues to walk and talk and eat independently, all things “they” thought he wouldn’t be able to at this point. He has continued to defy the odds and for that we are so thankful! Our strength comes from Greg and of course from God. But our daily reminders of love and support from our friends and even strangers are what sustain and strengthen us. Thank you for that!
We will Never Never Give UP!