Meet the MTeam: Greg, Laura & Meredith Lewis
Meredith Lewis, who just celebrated her big 10th birthday earlier this month (Happy birthday, Mer!), inspired our team captain John Christian to form the MTeam in 2016.
Her parents, Greg and Laura Lewis took some time out to share her story and theirs, talk about the way the MTeam and Best Buddies have made an important impact on their lives and give us some of their personal insight into the rare genetic condition that Mer was born with - FOXG1.
MTEAM: Your daughter Meredith was the inspiration for the MTeam’s formation and the “M” stands for her name! How did that all come about?
GREG & LAURA LEWIS: We have run with Meredith for several years. We've done lots of races together including a marathon and half marathon. Running is a great family activity for us since it gets us outside, keeps us healthy, and Meredith really enjoys it. A few years ago, I (Greg) signed up for the Best Buddies Hyannis Port Challenge on my own, thinking it would be a fun race that supports a cause I care deeply about (supporting people with intellectual and developmental disabilities). I was honored when John Christian contacted me shortly after with an idea to form a team inspired by Meredith called the MTeam. Having worked for the MTeam's lead sponsor CAPA The Global Education Network for 10 years and having known John since then, I knew if anyone could make it work, he could. In 2016, our first year, there were 6 riders and we raised $13,000. We couldn't believe it! We had no idea at the time how much the team would grow. This year, we had 50 MTeamers and we raised $150,000!
MTEAM: Tell us a bit about Meredith. What does she love most? What makes her smile? What makes her uniquely Meredith?
G&LL: Meredith is a love. She is an easy-going and adorable little girl. Everybody is equal to her - she's not afraid to fall asleep in front of a Kennedy or giggle loudly in church. When we hear extremely loud sounds that startle the rest of us, she busts out laughing. She loves flowers and knows when you are talking about her. She will shoot you side-eyes and look away as soon as you look over at her. She smiles when you talk about her friends or family, especially her friend, Aidan. She giggles when babies cry. She dislikes wind and is very dramatic when presented with 'the elements'.
She has a sweet tooth and I love to bake for her. Her favorite meal is pancakes and currently, her favorite movies are LaLa Land and Dirty Dancing. She tells us she's thirsty by making a certain sound with her mouth. She tells us she's hungry by continuously putting her hand to her mouth. She tells us she's tired by rubbing her eyes. Her baseline demeanor is relaxed and smiley. Though rare, she cries when she's upset, tired, or in pain. She is very social and loves to be around conversation and people, music and activity. She sleeps in the exact same position every night: hands by her neck, elbows splayed wide to each side like chicken wings. We call these her "Do Not Disturb" arms; it means 'see you guys later, I'm going to bed'!
Meredith turned 10-years-old in June and while we never could have predicted this would be the direction life would take us, we absolutely cannot imagine our lives without her and we wouldn't change a thing. We believe Meredith came into our lives for a reason and the more we follow her lead and accept and enjoy what life has brought our way, the better things get.
MTEAM: FOXG1, the condition that Meredith was born with, is extremely rare. For those who have never heard of it, can you explain a bit about what it is and how it manifests itself?
G&LL: FOXG1 Syndrome is a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function. When Meredith was diagnosed, it was explained to us that most of us have genetic mutations, but generally they don't manifest as anything. Since FOXG1 is critical for brain development, a mutation to this particular gene can cause severe complications. FOXG1 is characterized by seizures, inability to control body movements, and lack of speech. While the spectrum of abilities is quite broad depending on the exact genetic mutation, many kids with FOXG1 cannot walk or talk, and they struggle to communicate. Meredith presents on the severe end of the spectrum. It is possible for parents to be carriers, but most cases of FOXG1 are not hereditary and have no family history. There is no cure for FOXG1 Syndrome, but with medication, physical and speech therapy and nutritional support to help manage symptoms and prevent complications, a stable quality of life can usually be achieved. There are approximately 350 known cases worldwide. As there are so few adults diagnosed, we do not have a known life expectancy.
Meredith has seizures (they are somewhat controlled with medication), CVI (a vision impairment common in FOXG1), and she cannot walk or talk. She cannot use her body with purpose (no pointing or self-feeding). She has low muscle tone and wears a brace around her torso to help prevent scoliosis and ankle supports (AFO's) to school each day to provide support while standing in her stander. She recently had a G-tube (feeding tube) placed that we use primarily to administer medication and give extra hydration since drinking water is difficult for her.
MTEAM: Do you have any examples of how the MTeam has provided the severe and profound population with increased inclusion opportunities within the Best Buddies community?
G&LL: This year marked the establishment of an official Water Carrier position at the Best Buddies and Tom Brady Football Challenge. This annual football game takes place the Friday before the race and has never had a formal way to integrate non-ambulatory participants into the game. This year, thanks to The MTeam, Mer and another one of her close friends who is also non-ambulatory, we were finally able to be active participants rather than sideline spectators, something we have been working toward for three years. This is a massive step for those with severe and profound challenges. An integration milestone that will live on for years.
MTEAM: How has your experience with the MTeam and Best Buddies been beneficial to Meredith specifically and your family as a whole?
G&LL: Things have evolved somewhat in recent years, but when we finally received a diagnosis of FOXG1 Syndrome in 2011 (Meredith was 3.5), we left the doctor's office with no information. There was no Specialist to go see, no information about what to expect, no support. A handful of us parents got together to form the International FoxG1 Foundation (foxg1.com) which has been able to provide family support since then. It is very unsettling to be the parents of a child with a disease that the medical community knows so little about. Teaming up with Best Buddies has increased awareness of FOXG1 and has provided countless opportunities for inclusion and friendship for Meredith. It's helped us feel part of a larger community and shown us that Meredith's diagnosis doesn't define her. We love showing Meredith that even though she is differently-abled, with the right support, she has many opportunities to experience all that life has to offer.
MTEAM: What makes the MTeam special? What would you say to encourage others to join in?
G&LL: Being part of the MTeam has shown us how many people want to contribute to something greater than themselves. People want to give back, to make a difference, to be part of something that helps other people. We've been able to see and experience the energy and momentum that comes from a group of people all working together for a cause. Especially in a time where it's easy to get caught up in the negative through news, social media, etc. its been a beautiful thing to see just how much love and support is out there. Most of the runners and riders who have joined the MTeam return to take part again because of that energy.
MTEAM: What have been some of your favorite, most supportive or most useful resources during your journey with Meredith that other parents who have children that were born with rare conditions may also find helpful?
G&LL: We use social media (Facebook) to connect with other FoxG1 families around the world. With only 350 diagnosed globally, we are quite spread out. We have a FoxG1 Family Support Group where we can connect, share challenges and fears, ask questions, and learn from each other. We have had the opportunity to meet some of these families in person and it's incredible. We have a special bond since we share such a unique journey. We speak the same language. It feels wonderful to have conversations about equipment, seizures, meds, feeding tubes, and syringes, and have it feel completely comfortable. This is our normal and these people completely understand. It really helps us feel less alone.
We also feel incredibly supported by the Personal Care Attendants (PCAs) we have hired to help us manage some of Meredith's daily needs. These PCAs have become family to us. Having help with some of the lifting, showering and feeding involved in Meredith's care make life feel do-able. We are extremely grateful for Mer's besties, Danielle and Sheila!!
MTEAM: What’s one thing you’d like the world to know about Meredith or about FoxG1?
G&LL: Meredith may present differently from other people, but we believe she is the way she is supposed to be. There is nothing "wrong" with her and nothing wrong with being different. She is perfectly imperfect. It is her differences that make her special and unique. The more we embrace that, the more she flourishes.
MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you.
G&LL: The first year of the MTeam, there were only 6 riders. We were celebrating at the clambake after the ride and all the buddies were called up on stage to take a photo with Tom Brady. We were struggling to get Mer's wheelchair through the crowd and we thought we were going to miss the opportunity. People began to notice us struggling and started to clear a path to help get up there in time. The crowd started chanting "ONE MORE!! ONE MORE!!" TB and the gang took notice of what was happening and they held off on taking that photo for a moment so we could join. We hoisted Mer up the stairs (not wheelchair accessible!!), planted ourselves smack dab in the middle and TB gave us a big thumbs up while everybody cheered for Mer. It was a perfect Best Buddies moment, everybody banding together to ensure everyone was included. No-buddy left behind :)