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.

Greg instructs caregivers on treating the terminally ill

cctimes video training the docs

“I’m hoping that God will shed some light on this
and maybe cut me some slack. I am still in denial.
I haven’t come to my senses yet. :-)”

 

“Unfortunately, there is no cure,” Greg told about 25 members of the hospital’s psychology staff. “Gradually, the disease takes over more of the body, intellectual functions deteriorate, hearing loss, blindness, inability to speak, seizures … ultimately paralysis.”

It was a chilling and even heartbreaking message coming from someone who, with his quick laugh and sunny demeanor, looks like an entirely healthy teenager. For the interns and others in training, who normally are addressed at their weekly “didactics” educational seminar by a professional, it was “a thousand times more powerful” to hear from a patient, said Dr. Brad Schwimmer, a psychologist at the hospital.

Read more about Greg’s experience.

Greg’s Challenge: Living well with MLD

cctimes_video

“I have this disease, and I am living it day by day.
I am living my life day to day,
and I live it like it’s my last.”

 

Greg’s challenge is remaining free of the prison of other peoples’ perceptions. It is keeping loose from restrictions on his movement and his personal growth. It is exceeding the expectations that would set an expiration date on his dreams. Greg’s story is one of a 19-year-old man who, with the support of his family, is fighting the odds.

Read more about Greg’s journey.

Amazing and courageous

gregshirt_beachFebruary 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!

wish_02Greg 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.

wish_03There 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.

gregshirt_homeWe 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!