Ethan is extremely social, but limited due to his inability to walk and talk. He is completely dependent on his mom, but is so happy and full of life. Ethan LOVES interacting with people and flashes his winning smile to all he meets! He really wants to be able to run, chase, and play with his twin sister Katy, but he isn’t able to do much physically since he is dependent on mom to move him. He has been through so many surgeries and pain in his short little life, all in an effort to allow him to use his legs – something he wants SO BADLY to use.
The goal: Help him strengthen his legs and his bones to grow correctly. (His goal – chase his sister, filling the house with laughter). Mobility, independence, and freedom is priceless.
My son has been in a gait trainer for the last five years with problems, but the style of gait trainer led to problems due to the severity of leg crossing from Cerebral Palsy. As a result – his legs were banging and bruising, making it painful to walk. However, he’s had numerous surgeries in the last year to correct his legs and muscle tone. He had his femurs cut and re-positioned correctly, his hips were also re-positioned and put together with plates and screws. His journey has been rough. He had a baclofen pump installed, but they saw an increase in Ethan‘s seizures last year. Seizures caused his stitches to rupture four times, the last time resulting in another surgery to try to fix the stitches. Then he developed bacterial meningitis and had to have surgery again in August to have the pump removed. In January of 2019, Ethan had the plates and screws removed because they caused him so much pain.
His MRIs and EEGs indicate abnormality in the brain’s left hemisphere, causing seizures. Ethan is currently on medications to control the seizures at max doses, as well as his rescue medication – he is too medication resistant for them to do much good. His family was informed it was time to consider Ethan‘s “quality of life.” In fact, when his Neurologist looked at the EEG, he was astonished Ethan wasn’t in a state of constant seizures and is flabbergasted Ethan CAN do the things he CAN do. But he does it – and he does it all with a laugh and a smile. He shows everyone that no matter WHAT the odds are against you, no one can say for certain what you can and can’t do.
And what Ethan wants to do is try standing/walking with a new style of gait trainer on his new and improved legs….but he isn’t eligible for insurance help on a new gait trainer.
Ethan is giving up and neither are Variety KC’s generous donors! Let’s get Ethan the gait trainer he needs and see just how far this amazing young man can go! Donate today at varietykc.org/donate/