Emmett or “Mitt Mitt” as his family lovingly call him is a vivacious, sweet, loving little boy. At just 18 months old he is one of the bravest human beings ever encountered. Emmett was born at 37 weeks and came home following a brief NICU stay to his 5 other siblings. In his first weeks of life, he was not gaining weight, despite eating well. At just 6 weeks old we took Emmett to Children’s Hospital Emergency Department which would be the first of many (over 30) hospital admissions. During the first admission, Doctors were puzzled as to what was going on with Emmett, he had elevated liver enzymes and multiple other lab abnormalities. During this admission he was also diagnosed with laryngomalacia and underwent a supraglottaplasty which left him in need of oxygen. Emmett underwent a multitude of genetic testing and yet his illness remained a mystery. By 12 weeks old he had his first blood transfusion, they told us this was probably just a coincidence, and his family shouldn’t be alarmed but this began the cascade of multiple blood transfusions about every 6 weeks. By 4 months old Emmett had an NJ tube placed for feedings and he underwent his first of two liver biopsies. His liver doctor insisted the pathologist look at the liver specimen under electron microscopy (a very enlarged view) this was not protocol, as the original look did not provide anything “suspicious”. By looking at his liver under electron microscopy they were able to discover that Emmett had a problem with his mitochondria. Mitochondria are the membrane-bound cells that are responsible for generating chemical energy needed to power the cells. While mitochondria disease can be acquired at any age, the younger you are diagnosed the worse your prognosis is. Mitochondria liver hepatopathy (liver involvement) usually has a poor prognosis. His family was determined to help him in any way, they took Emmett to multiple specialists including CHOP (Children’s Hospital of Philadelphia), Boston Children’s and most recently Cleveland Clinic. They were told when he was just 4 months old by Doctors at Chop that he may never sit up, crawl or walk. They were told his neurological function may be involved and that they would not know an accurate survival prognosis for him until he made it to age 2. Emmett has surprised all the Doctors and he is now walking with the help of AFO’s (leg braces). He is a bright little boy who loves Thomas the Tank Engine. Emmett now has a gtube and he is continuously fed overnight as he can not fast due to his brittle metabolism. Mitochondria disease is sneaky, one day Emmett can be very playful and the next day he may not have enough energy to do anything. In times of low energy or stress to his body (fever, illness etc.) he must be hospitalized to receive sugar containing IV fluids through his port. Emmett’s lactic acid level and ammonia levels increase with stress on his body. Emmett’s genetic testing has remained elusive, and they are still unable to find the genetic link to his illness, so he is just labeled as having “Mitochondria Disease and Mitochondria Hepatopathy. “Because Mitochondria are present in every organ of your body, any organs using a lot of energy can be affected by this disease (heart, lungs, liver, brain) each day is scary for us because we never know how Emmett will be affected daily. His mom, Robin, says “Being a parent to a child with a prognosis which is uncertain is devastating. It is a life filled with fear, stress, and at times, sadness. More than anything as a parent you want to take your child’s suffering away. The last liver doctor I met with at Cleveland Clinic told me to live not for the future but for the everyday, enjoy each moment and live with hope. This is something I am trying to do each day. Emmett’s illness has taught me that the little annoyances in life really don’t matter much. I have devoted myself to researching mitochondria disease, as most parents with children with this awful disease have to advocate and find the best treatment for their children, as there are only 17 mitochondria doctors practicing in the US.”
Gold Star All-Star Family Day at the Y'alls
benefiting Reviv Family Support Foundation
Join us for a day of baseball, family fun, and philanthropy!
When you purchase tickets to the Florence Y'alls August 21st game through Emmett's page 100% of the proceeds will support families with critically ill children through Reviv Family Support Foundation. You also help Emmett on his quest to win lots of cool prizes.
Gold Star and Reviv are partnering for a day of baseball and fun to raise money for families seeking medical treatment at Cincinnati Children's Hospital. In addition to baseball, there will be coneys of course, a kid's zone with inflatables, an opportunity for kids to run the field, and other fun surprises kids of all ages will enjoy.
When you purchase tickets to the Florence Y'alls August 21st game, 100% of the proceeds will support families with critically ill children through Reviv Family Support Foundation, including sending Reviv families to the baseball game at no cost to them.
Thanks to the generosity of Gold Star, your $10 ticket purchase means $10 for Reviv to continue their mission of providing personalized support for families based on their unique needs, including purchasing meals for a parent staying with their child in the hospital to help alleviate the financial impact of getting the best care for their child, a toy for a child to brighten their day during their hospital stay, and so much more.
Join Reviv and Gold Star to fill the ballpark at Gold Star All-Star Family Day at the Y'alls. We invite you to enjoy time with your family and help us positively impact the lives of other families. That's what community is all about!
There are 3-ways to support the Gold Star All-Star day:
1. Purchase tickets to the game.
2. Participate in Coney for Kids! Every $5 sale will treat a Reviv kid to a Gold Star Coney meal.
3. Make a donation.
* Please present your order receipt at the stadium for your tickets. Tickets are non-refundable.