Easton

Easton's Story

Easton's mom, Becca, says...

"On January 6th, 2017- Easton Maddox Walker was born. Despite a month long NICU stay, we took Easton home a happy and healthy baby. 

But after only a few weeks at home, we started to notice some feeding and breathing difficulties. 

We noticed some things in the beginning as well like Easton had a large belly, he was frequently sick, and he also needed oxygen to sleep.

Easton was referred to early intervention for speech, occupational and physical therapy by his pediatrician. After that, he was then accepted into the Declan Dongue program at Brenners Childrens Hospital. This program takes children with complex medical needs who are undiagnosed and strives to find them a diagnosis. 

Even after multiple specialists involved, we felt there were still so many unknowns. However, Easton had been casted for a form of clubfoot that he had at birth. The orthopedic doctor noticed a rarity in Easton’s spine and consulted with a spine specialist. He already had some genetic testing done by neurology and genetics that had come back seemingly normal. However, the spine specialist ordered a specific urine test to test for something called MPS. 

I had already been familiar with MPS from my hours and hours of research to find Easton a diagnosis myself. But on November 8, 2017 at only 10 months old, a diagnosis confirmed that our baby boy did have mucopolysaccharidosis type two otherwise known as Hunter syndrome.

I remember always singing the song, “You are my sunshine” to Easton since I was pregnant but on that particular night of the diagnosis, I cried with every word. Within 24 hours, I think I went through every stage of grief, because though Easton was still here with us. I knew our life was about to change forever. 

Over the years, Easton has seen multiple geneticists and multiple specialists including : Neurology, Pulmonology, ENT, Gastroenterology, Orthopedics, Cardiology, Ophthalmology, etc. and he is on a Complex Care program to oversee his care as a whole.

Easton’s had many surgeries, tests, hospital stays, and has a feeding tube for nutrition and wears high flow oxygen for sleep apnea. 

Easton is obviously known for his bright, beautiful red hair and his blue eyes but he is also known for his resilient, brave, and strong personality. Quite literally to know Easton is to love Easton. 

Easton‘s dad and I made the decision that Easton deserved the best quality of life possible so we’ve made it our mission to give him as many life experiences as possible. 

I believe you have a choice when your child is diagnosed with a rare disease you can be all in and make the best of the situation or you can check out and make the worst of it. 

.While it most definitely has not been an easy journey. We are thankful from the support of family, friends, our home community and MPS community, that has made it easier to give Easton a beautiful life, and we hope we are able to share him and his story for many more years to come"