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”!!!
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.
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!
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 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 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!
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
They say it takes a village to raise a child. But what if when that child is a man he has a neurological disease that makes him dependent again? Praise God our village continues to help raise and lift our family with amazing support and love.
Our very good friend, Tara, saw an opportunity to help Greg realize one of his dreams. She advocated for him to be able to take a class at McDaniel College. They not only listened to her they have embraced Greg! We are delighted to say that tomorrow Greg will be starting his first college class! “Thank you” doesn’t manage to express the appreciation we feel!
Greg always intended to go to college but MLD stopped that from happening, or so we thought. We are so thankful that he will now be able to say he is a college student!
He likes history and so it is only fitting that his first class is on the Culture at the end of the Cold War.
Please continue to pray for not only Greg, but also pray for all those suffering from MLD.
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!