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

McDaniel College here we come! : )

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.

#Nevernevergiveup

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!

Merry Christmas!

The week before Christmas, Greg was in Pittsburgh for a long week of testing. This is the third year he has participated in a natural history study about MLD. They help to monitor his progression of MLD by physical and neurological exams, cognitive testing, physical therapy, ophthalmology, visual evoked potentials, optic nerve tomography, auditory brainstem response, audiology, MRI, and the dreaded nerve conduction study. It’s quite an exhausting week!

We are so pleased to be able to say that they found very little progression of his disease! He continues to be the “anomaly” he said he was from the beginning! Aside from some foot drop and minor changes in his MRI and hearing speech patterns he is basically stable!!! Praise God!

We want to thank our Amazing Prayer Warriors! We are so blessed to have your support on this journey! We know Greg is defying the odds because of you! Please continue to pray for him and all of our MLD families.

We will Never Never Give Up! Still looking for a Cure!

Friendship valley students organize “Pay to Play” fundraiser for MLD

Fourth grade Gifted and Talented students at Friendship Valley Elementary School have organized a “Pay to Play” fundraiser to raise money for research for MLD (Metachromatic Leukodystrophy). Students can help by donating money and get to play their favorite physical education games during the week of June 6, 2016. The goal is to increase awareness of this little-known disease and to raise at least $2,000.

The fundraiser was inspired by Greg Bennett, a 20 year-old former student at Friendship Valley who has been diagnosed with the disease, which involves degeneration in the white matter of the brain and central nervous system. Greg’s sister also attended Friendship Valley and his mother was a volunteer at the school. Since the family gave so much to the school, the students wanted to give back.

Gifted and Talented teacher Ivy Allgeier presented information about Greg and the disease to the students, who then researched the disease and invited Greg to come in and answer their questions. They decided to include athletics in the fundraiser because Greg needs to stay active to fight the disease. In order to educate all of the students at the school, Allgeier divided the students into three groups and made videos for the different grade levels. Students also wrote morning announcements encouraging students to participate in the fundraiser.

If the students reach their goal of raising $2,000, Allgeier will shave her head. She has issued a “double dare” to the students to raise $4,000. If they are successful, she will not only have her head shaved, but will be duct taped to the wall as well. In addition, Greg would very much like to be a guest on The Ellen DeGeneres Show.

Any members of the community who would like to make a donation may send a check made out to F.V.E. and marked “Pay to Play” to the school at 1100 Gist Road, Westminster, MD 21157.