Page 21 - 2019 Fall CMTA Report

LESSONS FROM JULIA

BY RACHAEL BERON

’ve been a CMT parent for 19 recommended by our pediatrician.
years and I like to think I’ve She took Jules away from me and
learned a few things along the tested her for more than an hour.
way. My daughter Julia is my Jules was not happy about that.
Iteacher. She is a shining example She didn’t like to be away from me
of the way kids with CMT over- and I knew the test wouldn’t go Rachel Beron and
come challenges. well. (LESSON ONE: You know your her daughter Julia
I was thrilled to learn I was child better than anyone else!) The
having a girl. I already had a 2- OT concluded that Jules was not
year-old son, Josh, who was only physically delayed (which I banner of TeamJulia, raising
anxious for a sibling. I imagined knew) but also cognitively almost $1 million to help fund
my daughter looking just like impaired. That’s when I lost it. programs and research initiatives
me—tall with crazy brown curly How can someone test an 18- for the organization.
hair (that’s mostly grey with blonde month-old child without her Two years ago, Julia was diag-
streaks now) and brown eyes. To mom present and come up with nosed with Type 1 diabetes. This
my surprise, Jules was a petite, that conclusion? (LESSON TWO: came completely out of left field
beautiful, green-eyed blonde, who Initial diagnoses can be completely and really threw all of us for a
looked nothing like I had imagined wrong; get second opinions!) I left loop. We had just spent 15 years
for those nine months. Unlike her feeling that although she was right trying to learn all we could about
very active brother, she was an easy about Jules being physically CMT, and then we had to learn
baby, docile and content to hang delayed (anyone could see that), how to help her manage her blood
out wherever we went. I was so she was completely wrong about sugar levels? This couldn’t be hap-
relieved. her being cognitively impaired. I pening! But in true Julia fashion,
The only concern we had ini- eventually found another occupa- this fork in the road only made Rachael Beron and her
tially was that Jules’ left eye was tional therapist who led me to her stronger. She joked: “When husband Herb have sup-
crossed. We met with an Julia’s physiatrist who eventually G-d made Julia, he mixed in a lit- ported the CMTA in a
optometrist who told us that we diagnosed Jules with CMT2E tle left optic nerve hypoplasia, multitude of ways for more
should wait until she was 2 to when she was 4. (LESSON THREE: figured he’d throw in a little CMT, than a decade. To partici-
pate in conversations about
have her “lazy eye” corrected. We Be your child’s advocate. No one is thought this still isn’t right so let the challenges and rewards
wouldn’t learn until later that she better at it than you!). me mix in a little diabetes.” of raising a child with
had optic nerve damage in that We had never heard of CMT: As usual, Julia doesn’t let any- CMT, visit the CMTA
eye. For 18 months, I enjoyed this No one in our family had it, and thing stop her. (LESSON FOUR: Parents Facebook group at
happy baby who loved in the beginning it was Kids with CMT are resilient!) Last www.facebook.com/groups/
CMTAParents/.
to be carried and was Julia is “a shining very scary. We inun- summer she interned with Run-
always smiling. I didn’t example of the dated ourselves with way of Dreams, a nonprofit that
realize anything was way kids with information, which led supports initiatives to broaden the
wrong—I was always CMT overcome me to CMTA Board reach of adaptive clothing and
on the go with Josh and Member Steve O’Don- promote the differently abled
she was just a pleasure challenges.” nell, who was doing a community in the fashion indus-
to be around. My mom swim across the Chesa- try. She also worked for University
told me that I didn’t walk until I peake Bay to raise funds for Tees, a national apparel company
was 18 months old, so Jules not research. I called the CMTA and that provides shirts, hats and other
walking before that age didn’t con- told them that my daughter had apparel to college organizations,
cern me much. But when 18 just been diagnosed with CMT and continued her successful art
months went by and still no walk- and I would love to participate in business sketching animals, homes
ing, my husband Herb and I got the swim. That was 12 years ago, and anything else she comes up
concerned, and we started taking in 2007. Since then, Herb joined with. Her resilience never ceases to
her for tests. the Board of Directors, serving as amaze me and I look forward to
I first took her to an occupa- chairman for several years, and we continuing to learn from her for
tional therapist who came highly formed our own swim under the many years to come. h
FALL 2019 THE CMTA REPORT 21