By Haley, Max's Mother:
 

When I was 22 weeks pregnant, our ultrasound tech found an abnormality on Max’s brain. We were told we need to see a high-risk pregnancy doctor as soon as possible to confirm an actual diagnosis.  We got in with one only four hours later.  The thoughts and fears rushed through our heads and felt like the longest four hours of our lives.  
 

What can be wrong with our perfect little boy?
 

The high-risk doctor confirmed that Max had extra water on his brain and he was missing his Corpus Collasum (the line in the middle of our brain that helps both sides communicate).  At 32 weeks, I had an Amniocentesis to confirm that this was not a genetic disorder.  At about 28 weeks pregnant, we went and had a fetal MRI that confirmed Max was indeed missing his full Corpus Callosum, and he was given the medical diagnosis of Agenisis of the Corpus Callosum (ACC).  We were told there are many different outcomes for Max’s full potential of life and we would learn more and more as he progresses in age.
 

When Max was born, we met the most beautiful little boy in the world.  However, the doctor immediately noticed a difference in his eyes… they were black.  At 6 days old, we took Max to a cornea specialist and were told that he has colobomas (holes) on the peripheral part of each eye and that he has cornea calcifications covering half of each pupil.  This would cause his vision to be like seeing through an “opaque shower curtain” for the rest of his life, but this would be his ‘normal’.  At 9 months old, Max had strabismus surgery and got his first pair of glasses!
 

Beginning at birth, Max had an MRI every 3 months and multiple genetic tests.  The genetic test answers never changed, but at his 3-month MRI they saw that Max was also missing his Cingulate Gyrus (the curved fold that covers his Corpus Callosum).  We were told this COULD cause developmental delays and may result in emotional and behavioral disorders.  But once again, we would learn more as he grew.
 

After hearing over and over and over that we would “learn more as he grows”, we knew we would do everything in our power to give Max everything he needs.
 

We started Max in physical and occupational therapy when he was about 9 months old.  He didn’t learn to sit up on his own until he was about 10 months old, and at about a year and a half he started to crawl. Max is now a thriving 4-year-old little boy.  He loves to dance and sing and play with his little brother! Max still can’t stand on his own or walk.  Last year, we got Max some orthotics and he continued the therapy twice a week.  He also started at a new rehabilitation and therapy center that uses robotics, swimming and floor play to help learn to walk and gain the confidence to stand.  He attended a 4-day/week intense therapy for one month, and has continued on twice a week. 
 

In addition, his therapists have recommended several things to help with his progress:  a gait trainer (walker), a sensory compression vest and pants, swimming, treadmill training (a device that hooks him up to a treadmill), and lots of therapy visits!  Insurance only pays so much… each visit is $110 out of pocket, and the therapeutic equipment is very costly.
 

Max has been a blessing and inspiration in our lives and we wouldn’t have it any other way.  With the help and love of his family, friends, daycare providers, and therapists Max has grown the be the most loving, kind, and sweet little boy.  Life with Max has been a journey that we are blessed to be a part of.
 

Max’s Wish:   Max is a lover of animals, super heroes, Toy Story and ANYTHING outdoors!  He would love a trip to Disney or a handicap-accessible treehouse.