Levon was born in August of 2009.
He is a fraternal twin and is affected by MECP2 Duplication Syndrome.
His brother, Maceo is not.
Levon is pure joy, laughter and absolute light - but he struggles to do even the simplest things that his twin brother can do.
Levon is non-verbal and with a lot of hard work and tireless effort, Levon started walking independently in April of 2013 at 44 months. He still needs assistance when he walks to keep him safe and he tires a lot quicker than his brother due to the amount of effort it takes for him to do these tasks.
As we've watched him work so hard to gain the skills of first feeding himself, and then crawling and now walking,
It makes us even more motivated to raise the funds for the remarkable research and science that is happening now
- and that will hopefully end this terrible syndrome.
We didn't have a diagnosis early on. We kept telling our pediatrician that we felt like something was wrong. That something wasn't quite right because Levon wasn't doing things that his twin brother. We had a side-by-side comparision. But, the pediatrician kept telling us, "He'd be fine. He'll catch up" - But in our heart of hearts, we knew we needed to do something and be pro-active. Joseph found an amazing physcial therapist down the street from our house and at six months, due to the physical therapist's urging, we got Levon into physical therapy.
Then at eight months, we got Levon into "early start "and "early intervention" and soon we had him in: twice a week physical therapy, twice a week occupational therapy, once a week with an "in-home" teacher and once a week speech therapy. It was a very full schedule for little Levon - but he was such a trooper and always did each session with a smile.
On February 28, 2012 the day we got Levon's diagnosis...
Our lives changed forever.
We were devastated and found ourselves completely in the dark about this mysterious diagnosis. The geneticist who discovered his diagnosise knew very little about the syndrome and even misdiagnosed him at first saying he had Rett Syndrome.
The doctors all told us not to turn to the internet because it's all very depressing and scary. And it was.
All the information that we could find seemed like a death sentence. Short life expectancy, seizures, regression.....
We cried a lot in the first few months after the diagnosis - and actually had a tough time letting it sink in. But it needed to sink in so we could move past the sorrow, and anger and start figuring out how best to navigate our path.
We needed to find answers on how to deal with this diagnosis and how to help him thrive. We knew their would be many challenges for our son, and in turn ourselves so we wanted to find out how to handle his condition on a daily bases as well as in a "big picture" scope. We also wanted to some how find "hope" in a seemingly "hopeless" situation.
Once we knew the name of what we were up against, our path took us to a wonderful clinic called, "Katie's Clinic for Rett Syndrome and MECP2 Disorders". It was there that we met families, doctors and clinicians who knew exactly what we were up against and showed us for the first time how to access Levon's form of communication. Due to the fact that this disorder does not allow Levon the use of his hands and arms in the way that say, his twin brother can .. and that Levon does not have words .. it was such a huge moment to see that Levon can clearly communcate through "eye gaze". It was so incredible to see that if we just took the time to let him express his opinions and desires through looking at what he wanted, he could tell us his preference and his choices. That was a huge day for us. We knew Levon wanted to communcate with us, we just didn't know how to access his form of communication.
I think our first visit was just what we needed. It gave us a sense of hope and instilled a desire to seek out every possible resource to find ways to help Levon. It gave us strength in this new community of parents, doctors and clinicians all there to help. It really helpd Joseph and I to know there were other families -- going through it and right there in it - and that somehow -- even though we are a part of a club we NEVER wanted to be a part of - we now had support, and we could fight for our children and learn from them and grow through this.
And so began our journey. And we have met so many amazing people along the way so far and made so many incredible connections and friendships.
And through this journey, Joseph decided he wanted to make a film about our experience and where Levon's diagnosis has taken us.
In March, of this year, we devided to attend the 2nd annual MECP2 Family Conference. By bringing our son to these experts of MECP2 Duplication Syndrome at Baylor College of Medicine in Houston, Texas, we hoped to learn more about ourselves and our son in this promising and exciting year for science.
With a number of families, Dr.'s and clinicians coming from all over the world we wanted to film and capture the strength, motivation and determination pushing these individuals to find new hope in a pretty grim diagnosis. MECP2 Duplication Syndrome is a tragic diagnosis that affects a very small number of people in the world, generally presenting with missed milestones, inability to walk, talk, crawl and often chronic respiratory infections. So rare that I would almost guarantee that most people have never heard of it. With only 400 cases ever reported and only 140 active cases in the world this is a small scale community and yet a powerful one.
Why is the science for such a small group so important you may ask? Well the link between the clinical and genetic diagnosis is known and documented unlike many other diseases in the world. Which means that scientists can try to treat or cure this disease with a level of certainty that is unmatched. Currently the only testing being done is with Mice models in labs and computer models. But with more support and more science this gene and protein known as MECP2 could change the way all science is done.
Our wish is that this film will bring hope to the families around the world with this and similar diagnoses.
This is for Levon.
This is our "project of love" for him.
Thank you for inspiring us daily... to us, you are our very own Super Hero!!!
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