Surgery gives Greg hope and pushes him forward!

March was a busy month for Greg. He has been having more difficulties with walking which is heightened when he’s tired.
He has had two surgeries – the first being a test trial to see if his body would react well to intrathecal (in the spine) Baclofen. Fortunately, it did! So the second surgery was to implant a Baclofen pump in his abdomen that is connected to a catheter in his spine to administer medicine directly into his nervous system.
He is now home recovering but has to return to Kennedy Krieger several days a week for a few weeks to adjust his dose and for physical therapy sessions to help retrain his walking.
We are seeing some improvements, albeit slow. The trial “reaction” is what is giving us hope and pushing him forward!
We ask our prayer warriors to continue praying for Greg – specifically for healing from surgery and for his body to respond well to the pump medication!

On a side note, Greg taught a lot of nurses and students about MLD during his six day stay at Hopkins! Raising awareness and hoping for a cure! Hoping to give more speeches at new venues in the near future!

Special shout out to our PT’s Christie and Rachel. Our Nurses: Keisha, Nelson, Ashley, Valerie, Danielle, Shannon, Kathy, and Hohyung! And our students: Taylor, Alisa and Richard (looking forward to educating some nursing professors!)
#Nevernevergiveup

Greg talks MLD with nursing students at The University of Maryland School at Shady Grove campus

Greg had the opportunity to share his story about MLD with nursing students at The University of Maryland School at Shady Grove campus today. Thank you Ben Canha for allowing us the opportunity to educate your students about MLD

We were touched by the inquisitive nature and heartfelt wishes we were blessed with today.

Our world is bright with these future nurses at the helm. We continue to have faith that they or one of their colleagues will be the catalyst in helping us to find a cure for MLD!

We will #nevernevergiveup

Thank you from the bottom of our hearts!! 

One of the things MLD does is wreak havoc on the nerves that help you control muscles. Greg has clonus – which makes his legs shake uncontrollably- they get worse when he walks on his toes which is what he does on stairs. He has fallen down the stairs too many times – so we just had a stairlift installed. We’re trying to maintain his independence for as long as possible but safety first!

This wouldn’t have happened without the support of Gregschallenge community! Thank you from the bottom of our hearts!!

Also a special shoutout to Dan, Larry and Mark that came out to install it!! – We were so impressed with their expertise and kindness – Dan-Lar Stairway Elevator Service, LLC

#Leukodystrophyawareness
#Nevernevergiveup

Greg visits Las Vegas, Mt Zion, Bryce Canyon, Grand Canyon and Sedona!

Greg just returned from a whirlwind “Guys trip” to Las Vegas, Mt Zion, Bryce Canyon, Grand Canyon and Sedona! How do we put into words the appreciation and love for Brian. He seamlessly arranged all the travel, accommodations, tours and food – all while keeping in mind the challenges that Greg faces daily! The memories made, the laughs shared, the struggles met, the friendships forged … Priceless! Greg said the trip was a 10 out of 10!! From the bottoms of our hearts THANK YOU Brian and all the Guys on this “once in a lifetime trip”!!!

Greg talks MLD with Nursing students from UM, Shady Grove Campus

Thankful that Greg has a voice and the willingness to use it to educate others on MLD. Despite his struggles he is quick to share his story and allows others to witness and participate in his journey. So proud of him! ❤
Greg had the opportunity to share his journey and educate a new group of Nursing students on MLD today! Our sweet friend Kendra was also able to join us and share about her nephew’s journey with Late Infantile MLD.

We are so grateful that Professor Ben and the University of Maryland, Shady Grove Campus has been so welcoming to him and family!

We are encouraged to see the next generation of nurses that will be caring for us all. They are warm and compassionate and surely enthusiastic about their future careers. We wish them the best and hope that they will share Greg’s story and remember that when things don’t look right they probably aren’t.

#Nevernevergiveup

Blessed by the generosity of others

Once again, Greg was blessed by the generosity of others. The kind members of the Door-to-Virtue Chapter No. 94, Order of the Eastern Star, Westminster, MD spent the last year raising money for him to assist him in purchasing a stair lift. They presented him with a check last week at their Chapter meeting. He was greeted by a warm and friendly group that obviously want to make a difference in his life.

We continue to be impressed by the number of people that are on this journey with us. We feel the love and support and are truly grateful!

#Nevernevergiveup

Turning adversity into advocacy

We are so proud of Greg and the courage he has despite every struggle he faces – but he’s our son! To get a phone call from a world renowned neurologist saying that our boy inspires – Him… Just Wow!! We have always felt a connection with Dr Fatemi and clearly he feels it too! God is good! (Listen to the audio recording above the article – 2 min)

#MLDAwareness we will never never give up!

Greg is forging a wonderful legacy at The Arc

Greg is helping The Arc focus on a “person-centered” approach to care! He is helping them pioneer a new way to work with clients that don’t necessarily fit the day habilitation approach. We are blessed to have a team of professionals that are committed to ensuring that he has the best quality of life possible. He really enjoys the fact that he is their “Guinea pig”. He continues to change the world around him! Check out the article.

We will Never never give up!

Greg shares his story at the University of Maryland School of Nursing

Greg was able to share his story and raise awareness for MLD at the University of Maryland School of Nursing today. As a bonus we were able to spend some time with Kendra who shared a bit about her nephew’s MLD journey as well.

We are certain that this generation of students will be able to help Greg achieve his goal of spreading awareness – with the ultimate goal of finding a cure!

#Nevernevergiveup

Great first day at McDaniel College!

Our Green Terror had a Great day today!! Greg really enjoyed his class – relating the Cold War to the effect it has had on Hollywood is right up his alley! The professor is very engaging and kind! Greg was able to give the class a brief explanation of MLD and some of his symptoms with the hopes that his classmates will be more understanding. He passed out his card so that they can learn and share his story too.

We are so proud of Greg’s courage and perseverance despite the obstacles in his path. #Nevernevergiveup