I’d like to introduce you to Ava. For Ava and her family, tube feeding is a precious gift. I wanted to share her story with you all to show the other, positive side of tube feeding, and to try to help send more supporters her way. She and her mother deserve the biggest and most raucous cheering section possible.
I’ll let Ava’s mother handle the introduction. From Ava’s CaringBridge.org journal, updated regularly by her mom:
“Ava is a smiling, laughing, dancing 5 year old diagnosed with a mitochondrial disease. She loves school and dogs, the computer, and her family, who love HER more than anything in the world. She’s dealt with so much more than she should know, but takes it mostly in stride with an amazing attitude.”
Ava’s diagnosis came after four years of dealing with a host of serious issues and symptoms, from severe GERD to dysmotility to cardiac arrhythmia to hypotonia and on and on and on… a string of conditions that for so long had no concrete explanation. By then she’d experienced an incredible number of invasive, life-saving procedures including placement of a G-tube in 2006, followed by a GJ the next year. Finally, a very specialized type of biopsy revealed her true diagnosis. Mitochondrial disease comes with a sweeping range of challenges. To hear the description of the condition is to be haunted by it. From umdf.org, the website of The United Mitochondrial Disease Foundation:
“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.”
Clearly, mitochondrial disease takes a vast toll, poses daunting and often heartbreaking questions, and total vigilance is required on the part of caretakers in a non-stop effort to maximize quality of life and encourage and prolong vitality and well-being. Tube feeding is one of many types of ongoing support that kids and adults with mitochondrial disease often require for survival. The type of strength and dedication and refusal to settle that Ava’s mother has demonstrated is impossible to capture in words. Ava enjoys the best possible quality of life given her condition, and tube feeding is essential to this. Look at the photos on her site and you’ll see a vibrant, adorable, happy child. And that smile! Oh my goodness. I imagine that to her mother, Ava’s wide-as-can-be grin is the sweetest reward, the best confirmation of her good efforts, the fuel that feeds her soul. Ava’s mother has continuously and tirelessly pushed for the very best options available, proactively searching out any and all treatments and therapies and support for her sweet child, and diving headfirst into the crusade for a cure through her involvement and leadership within The United Mitochondrial Disease Foundation.
This woman and her daughter are the kind of people that should be celebrated in our society. Why is it that with all the soundbites constantly buzzing at our ears and eyes, we never hear about the Avas of the world, nor their heroic mothers? Love this strong deserves a spotlight. I’m shining a little one on it, and I hope you’ll join me. Post a message of support in Ava’s guestbook–I dare you to resist that smile.
In closing, a well-chosen quote I found on Ava’s site, which seems to sum up her mother’s philosophy:
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”
— Shel Silverstein