Make a gift to The ML4 Foundation in honor of Jack today!
We are Brett and Natalie Kizer, and we live in Ohio with our children Liam (9), Jack (7), and Theo (5).
Jack was born in the summer of 2015 — a very calm, reserved and happy boy. He loved being held, and could always be found snuggled close to mom. We noticed he struggled early on to keep his head up and he almost always held a hand up close to his face so he could examine it. As he began to grow, he wasn’t hitting typical milestones. We noticed one of Jack’s eyes crossing and mentioned it to our pediatrician, who referred us to an ophthalmologist. The ophthalmologist discovered that Jack had cloudy corneas and referred us to a cornea specialist to discuss the possibility of a corneal transplant. We met with the specialist, who determined it wasn’t the standard corneal clouding, and suggested that we visit the genetics/ophthalmology clinic department at the Children’s Hospital.
The summer of 2016 we sat in the Human Genetics Department, two weeks shy of Jack’s first birthday. The doctor told us they suspected that Jack had a more serious genetic condition, and that we should commence testing to figure it out. Fast forward to April 2017, after 10 months of extensive testing and a brain MRI, Jack was officially diagnosed with ML4.
Jack is a bright light in our world. His laughter can fill a room and he loves to annoy his brothers by grabbing at their legs when they walk by, sometimes tripping them. He loves to dance, especially to upbeat music. He will crawl around in circles and scream and laugh! His favorite toys are those that show a cause and effect. He loves to sit in his bumper car (a remote control bumper car that he can maneuver with joysticks) which allows Jack the freedom to keep up with the boys. He loves the TV remote, mostly because when he presses the buttons, his brothers react. He’ll flip through books, and loves when you read The Little Mouse, The Red Ripe Strawberry, and The Big Hungry Bear. He’s never late to the dinner table, and can out eat his brothers with ease. If there is an option to go swimming, Jack is all for it, the freedom he experiences while in the water is an amazing sight and the joy he feels is unmeasurable.
Jack participates in physical, occupational, aquatic and speech and feeding therapies. It’s a toss up which two are his favorite. These therapies are essential in keeping Jack progressing with inchstones (as we like to call milestones). We’ve found that by repetition he can retain more information. We are looking forward to introducing communication devices, where Jack can push an image and convey what he wants to us (SHOCKER….his favorite button is “food”).
For us, some of the greatest challenges are in his moments of frustration and anger. Jack communicates via sounds or grunts, and trying to process what he is trying to tell us is at times difficult. Watching him interact with his brothers brings both joy and heartache. He is constantly chasing after them in an attempt to participate in their active play.
Our concern as he grows is being able to care for him in the comfort of our home and watching the disorder slowly take away any of his independence and progress that he’s made.
We hope that through the continued efforts of the ML4 Foundation, treatments will become available in Jack’s lifetime. We know that in order for this to happen, we rely heavily on our friends and family to financially support the research programs working hard to find a treatment or even a cure!
ABOUT THE ML4 FOUNDATION
ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.
The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!
If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Jack Kizer.
Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309
The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501