RTG Wheels for Noah
$19,158 Raised
104% of $18.5k goal
1011 contributors
0 days left
Ended Nov 4, 2013
Help us get a wheelchair accessible mini bus for the Estes family. Son Noah suffers from Mitochondrial disease and they are in need of reliable transportation for the entire family. Please read full story below: More ...

Meet the Estes family. This is a family with 8 children (http://www.prayingfornoah.com/p/our-family.html)...the 7th being incredible 7 year old Noah. This boy with the infectious grin has mitochondrial encephalomyopathy.  He was also born with several congenital birth defects (heart and digestive organ defects) that make his disease even more difficult to manage.  “Mito” (for short) as we learned with Katie Graham, is caused by a genetic defect.  It is untreatable, progressive, and life-shortening.  Because of mito, Noah has lost the ability to walk and to eat.  His vision is now also being affected.  He’s lost all use of his digestive system (can’t even be fed with a g-tube) so he has a large central line in his chest that leads to his heart and splits out into 9 I.V. lines.  All of his nutrition is given in I.V. form and he receives about 30 doses of I.V. meds on a good day.  He has at least 4 I.V. pumps running at all times and has additional ones running on and off during the day and night.  One of the continuous pumps is a continuous narcotic drip to try to control the pain his disease causes.

This monstrous disease has also caused issues in his bone marrow (he now needs regular blood transfusions), nervous system (cannot control his body temperature, sleeps a LOT, is developing short term memory issues, and is currently being tested for seizures), his lungs (chronic lung disease), liver, bladder (has a surgically placed tube under his belly button that drains his bladder into a bag around the clock), heart, endocrine system (adrenal failure has caused his weight to skyrocket unrelated to calories) and other body systems.  His joints, especially in his legs, are being affected and either no longer straighten or are starting to turn/bend the wrong way.  He is a very, very fragile child medically.

Despite all of his lines, drains, medicines, and treatments, Noah has never lost his cheerful, engaging, loving personality.  He’s a smart and funny child who loves Legos, dinosaurs, dragons, Angry Birds, and other typical little boy things.  It is ESSENTIAL to this family that they give Noah the most normal life possible.  He lives life as much as he can handle and he loves to go bowling, go to the library, attend church/Sunday school, and go to art classes.  He spends most of his time in a hospital bed in what used to be their playroom but Noah's parents try very hard at getting him to any and every activity that he can tolerate and that they can afford.  

Noah has many, many doctors appointments and surgical procedures.  It’s not unusual to have multiple appointments a week and he has at least one surgical procedure a month.  Each of these is over 100 miles round trip.  It is possible to sometimes get ambulance transport to some of Noah’s appointments, but not to all of them by any means. Many of his appointments are emergent/critical and mom Kate can’t get ambulance transport without 3 days notice or unless she calls 911 -  these critical last minute appointments don’t fit either category.  They certainly can’t get ambulance transport to things like Sunday school, birthday parties, the park, or art class, and the idea of keeping Noah completely homebound breaks our hearts.  They have almost lost Noah many times and we can’t even put into words how important it is to the RTG to give this amazing little warrior the most normal life he can have.

We are fundraising for a used bus similar to the one pictured here. We encourage you to watch the video above to get a full sense of this family's love and devotion to one another. Go RTGA! Go NOAH!

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