Dominic Cumo is an inspiration. Dominic, now ten years old, was diagnosed with amyotrophic lateral sclerosis (ALS) from birth. He is in fact the youngest person to ever be diagnosed with ALS and was not initially expected to live more than four years. That seems like a pretty harsh and unfair hand to be dealt for anyone, but its hard to feel anything but positive, happy and inspired when around Dominic. I personally had the gift of meeting Dominic and his beautiful family a few months ago. I have never seen this little guy not smiling and Dominic exudes pure joy. He loves baking and believe it or not, recently received his black belt in taekwondo. He accomplished this while confined to a wheelchair and on a ventilator.
Dominic lives in Apple Valley, California with his adoptive mom Shawnee Cumo and her husband Matthew (Matteo) Bateman. He came to the Cumos after having a very rough start in life. Dominic was born addicted to drugs, suffered severe withdrawal, seizures and struggled to put on weight for his first two years. Doctors believed that Dominic had intolerance to food and that he was unable to digest and metabolize any food eaten by mouth. They recommended a feeding tube for Dominic when he was two years old. The tube finally helped Dominic to gain weight, but doctors remained convinced that Dominic would never be able to metabolize food orally that he would eat by mouth for pleasure only, not for nutritional sustenance.
Dominic has a degenerative disease, Shawnee said. As his disease progressed, his energy requirement needed more calories. What many people do not realize is that in ALS patients, energy balance is profoundly altered resulting in hyper-metabolism.
Dominic had originally been placed on a G tube in his stomach, but was changed over to a GJ tube (the J portion feeds right into intestines) so that he would gain more weight doctors surmised that Dominic was unable to tolerate food in his stomach. We had to be careful feeding him this way, run very slow (40mm per hour) in his intestine so he wouldnt get sick.
While this was happening, Dominics mom, Shawnee, began removing any potentially harmful chemicals from their lives with the hope that it would improve Dominics quality of life. This included household chemicals, but also food. She noted that the typical doctor-prescribed enteral formulas were full of chemicals and unhealthy ingredients like corn syrup solids.. She began looking for a better option, and her internet research soon led her to Robin Gentry McGee and Liquid Hope in 2014.
Not long after Shawnee began trying Liquid Hope with Dominic, a problem occurred with Dominics GJ tube the J portion that delivered food to his intestine stopped working. Yet Dominic continued to do well. The Liquid Hope was going through the G portion of the tube into Dominics stomach, and Dominic was obviously metabolizing that food. When they discovered the problem with the GJ tube, they decided against replacing the J portion and instead seeing how Dominic would continue to do with the G tube.
Hes now off the J tube and we can double the rate of feeding. Even better, he can eat by mouth too! Shawnee said. He has a full appetite; hes getting everything in his stomach at double the rate, but still gets hungry to eat by mouth. His doctors are realizing Dominic can metabolize food. Hes also gotten off three out of his four allergy meds since March and has no issues with painful gas with Liquid Hope which has been a major issue with other formulas.
Shawnee has seen other changes in Dominic as well.
His energy is incredible! she said. And hes improved in so many areas where he used to struggle. He woke up three weeks ago and started reading out of the blue he struggled for years with math and reading. He had a hard time with multiplication tables and reading without help. He had trouble with spelling. Now hes reading on his own. He loves it! I absolutely attribute these changes to his diet. Hes getting real, healthy food now and its making a big difference.
The family works hard to keep organic in their eating and especially enjoy supporting their local organic farmers by purchasing directly from them.
Dominic is an absolute carnivore! Shawnee joked. He loves chicken and salmon and will eat just about anything Italian. He loves going with us to the local farm and buying chicken, fruits and vegetables. Its a great way to get him to try new things if our farmer grows it and Dominic can see it is real food that comes from the soil, hell almost always be willing to try it.
The energy Dominic gets from eating right does not go wasted. He uses much of it to inspire others going through ALS online.
They said he wouldnt live past age four, but hes now ten, Shawnee said. Hes got such a great attitude; he stays positive and doesnt get depressed. All the ALS patients around the world he really lifts them up. People who are newly diagnosed are so encouraged when they see Dominic thriving in the late stages of ALS hes having the time of his life. He always reaches out to people having birthdays, and people always want to meet him. He gives them hope and helps them to see their situation in a different perspective.