sweet kalen

as many of you may know, my five-year-old nephew, kalen, was diagnosed with chiari malformation last february. chiari malformation is a serious neurological disorder where the bottom part of the brain - the cerebellum - descends out of the skull and crows the spinal cord, putting pressure on both the brain and spine and causing many symptoms. (source)

the symptoms for chiari are wide ranging, diverse, and affect everyone differently. some common symptoms include: severe headaches; extreme pain in the neck & shoulders; trouble swallowing and sometimes speaking; loss of bladder & bowel control; loss of fine motor control; weakness, stiffness, and pain the the arms & legs; balance problems; numbness in hands & feet; and the inability to feel hot & cold.

tomorrow, kalen and his parents (jake & stephanie maine) will travel to chicago and prepare for kalen's decompression surgery, which will be done on monday, march 26. during decompression surgery, kalen's neurosurgeon (dr. frim) will remove a piece of kalen's skull to make more room for his brain. the surgery will last approximately 3-4 hours, and he will spend about a week in the hospital. recovery can take several months.

kalen jacob maine. my nephew & my hero.
photo by Cast of Thousands Photography

i am telling you all of this so you know how you can help. wilton is a small community and in a way, we are one big family. on may 19 from 7:00 am to 7:00 pm, the first annual team kalen carnival for chiari will be held at the wilton high school track and field. there will be a variety of activities in which to take part, such as: a run/walk-a-thon, bounce house, children's games, raffle, concession stands, baked goods, kid's dash, cake walk, face paintings, and many more. it will be a great day to gather up the family, have fun, make memories, bring awareness to the chiari foundation, as well as raise money for a good cause. all proceeds will go to kalen's medial bills as well as the chiari foundation.

the maine family.
kaedon, steph (holding kinnick), krue, jake, and kalen

together we can raise awareness! please visit our website for more information. if you are interested in volunteering, donating, becoming a team kalen sponsor or joining the run/walk-a-thon, please contact us at goteamkalen@gmail.com

we hope to see everyone there!