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Ethan

by Marta Elena Cortez-Neavel |

Meet Ethan, as introduced by his mother, Lisa and sister Serenitie:

My handsome son, Ethan Marshall Collins, was born one week before my scheduled C-section on March 24, 2014. He weighed 7 lbs,3 oz, and was 21 inches long. My pregnancy was beautiful. Nothing seemed out of the ordinary.

March 24 marked a turning point in our lives. That day, I was sent from the emergency department to the operating room. Ethan was born with only 10% oxygen levels and was whisked right off to the NICU. I was not able to see him until I came out of the recovery room. When I finally saw him, he proved he was my fighter. Within a few hours, Ethan was able to come off the oxygen, but he still required medication and Bili light therapy for high liver enzymes and bilirubin. He spent six days in the hospital, weighing only 6 lbs, 2 oz when he came home.

Our new "normal" life began shortly after returning home. Ethan started to have difficulty feeding and struggled to gain weight. We tried everything to get him to latch onto his bottle, and even resorted to using an NG tube, but nothing worked. Over the next few months, Ethan was in and out of the hospital and gained 13 specialty doctors.

In November 2014, Ethan was diagnosed with neutropenia (which presents as an abnormally low white blood cell count) and spent ten more days in the hospital. A month later, he underwent his first bone marrow biopsy. With treatment, we can maintain his blood levels, but he will need to get a biopsy every year.

On March 22, 2015, Ethan was officially diagnosed with Spastic Quadriplegia Cerebral Palsy. Since then, he has had partial removal of his left kidney, tubes put in both ears, throat surgery, a blood transfusion, a GJ feeding tube placed in his belly, and a port placed in his chest. Ethan also has gastrology problems, vision, and hearing problems.

Today, Ethan uses a special stroller/wheelchair to get around, which is called a Zippie Voyage. At home, he uses a gait trainer walker, special needs bath chair, special needs bike, suction machine, and a pulse ox machine. He is also attached to a feeding tube 20 hours a day.

We call Ethan "The Hulk" because no matter what the battle, he fights through it with strength. He always has a smile on his face. Whomever he comes in contact with is amazed with his long eyelashes and a bright smile. He loves to be sung to no matter how out of key, though certain pitches do make him cry, so we are figuring that out. He recognizes his family and friends through touch – moving his hands over their faces and hair. Ethan loves the feeling of air blowing on him, and giggles when he feels it.

Our lovely boy has many more rollercoasters and battles ahead of him, but I have faith he will continue to smile through it. These diagnoses are not going to stop Ethan.

Do you know someone with an Abilitee Story, or would you like to share your own? We'd love to hear it! Send us an email at hello@abiliteeadaptivewear.com to get started.

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