Maxwell was born with a profoundly debilitating condition called FOXG1 Syndrome. FOXG1 syndrome is a non-hereditary genetic condition that leaves Maxwell without the ability to walk, talk, sit, stand, grasp objects, feed/toilet himself, and caused a coritical vision impairment rendering him legally blind. He also requires a feeding pump to provide nourishment through his gtube. FOXG1 caused Maxwell to develop epilepsy in March 2019.
Despite all of these challenges Maxwell faces daily, he is the happiest, kindest, most patient kid ever! He never gets mad and loves music, swimming, mickey mouse, pigs, mardi gras beads, painting, bells and anything that lights up and has sound. He is a joy and blessing in our life and is loved by all!!! He even helped EXTRA LIFE raise $10,000 for Cincinnati Children’s Hospital (which he attends) by being the HERO KID for WV Fox gaming campaign! He is our little star!
Updates (4)
February 9, 2020
Hey Friends! We have been a little quiet lately. The flu broke out at Maxwell's school, and so I kept my kids home for a week, and am continuing to keep Maxwell home until most of the kids are healthy again. Max has trouble clearing congestion in his lungs, so the flu would be really hard on him. We are praying he doesn't catch it.
February 18, Maxwell will be having vision surgery to try and make the crossing of his eyes less severe. At Maxwell's most recent eye exam, the ophthalmologist said he was on a 9 month level for vision, and legally blind. Maxwell does have low vision, and can see some things, but cannot focus and the doctor said she didn't believe Maxwell has depth of field.
The vision surgery will not restore Maxwell's vision, rather, it will give him a chance at improved vision. The doctor emphasized that I should not expect his vision to correct once the surgery is done due to him having a cortical visual impairment.
(CVI has to do with the brain not processing what the eyes are seeing.)
My hope, is that the surgery will allow Maxwell to see a little more, and possibly have more accuracy playing with toys and making choices for things he wants.
Please pray that all goes well with Maxwell's surgery. Thank you all for your continued support! Having a wonderful community like you all means the world!
Oh, and in other news, I took Maxwell sleigh riding for the first time yesterday!! After 5 times of carrying him up the hill, on our last run, he gave me a smile!=) I think he really enjoyed it after he got used to the cold!
January 29, 2020
Max joined the YMCA! This is something we did a couple years ago, and decided we have to get Max back to the pool this year. During the day, Max sits a lot in multiple different chairs from his wheelchair to his PPod chair. I worried about Max's activity level. The pool is the best way to get Max moving and exercising!
Our first day at the pool, Max instantly started smiling when he got in the water. We stayed for an hour and Max moved the whole time! This week, we are going to go back to the pool.
All of my boys are staying home this week as the school has been hit pretty hard by the flu. I hate for Max to miss school, but it would be worse if he caught the flu. Hopefully, Max will be back to school in time for the Valentine's Day party!
PS- Thank you ALL for your donations, shares, and support! We are so appreciative for all you have helped us raise toward Max's van!
Photo Galleries (1)
Guestbook
February 7, 2020
Love you and you’re sweet family
Emily Coe
February 7, 2020
Hugs and wishes from my family to yours.
CHANTIQUE Wilson
February 1, 2020
God Bless you and your family!
Nancy Bynon
