Claire Elise

Our Claire-bug was born on July 25, 2001 after a normal pregnancy and delivery.  Upon her birth, doctors immediately knew she had microcephaly, a condition meaning small brain or small head. We never expected to hear this devastating news, nor did we realize the full extent of Claire's problems until even months later.  She was diagnosed at 3 1/2 months of age with MSG -- Microcephaly with Simplified Gyral patterns -- by Dr. William Dobyns (then at University of Chicago), a leading expert on MSG and other similar conditions. This genetic condition is believed to be autosomal recessive, thus having a recurrence rate of 25%.

4 months old

We were heartbroken initially, as we were told that our daughter might not live to be 1 year old. We still vowed to make our her life (and our lives) the best we could and enjoy every moment we'd have with her.  Though she has dwarfism (still undiagnosed... been searching for the gene(s) associated for 12+ years with ZERO matches genetically), Spastic Quadriplegia Cerebral Palsy, epilepsy, scoliosis, a g-tube (feeding tube in stomach), Cortical Visual Impairment (CVI), and other issues, we have chosen not to focus so much on all that is "WRONG" with our child, but instead, we cherish all that our "Mimi" brings to our lives.  Her "issues" are normal to us, and we choose to not view them as negatives but instead as just a tiny part of who Claire is.  She is an amazing little girl -- stronger than anyone we've ever known! -- and SO MUCH MORE than just the sum of all her diagnoses.
April 2014

We have chosen more of an alternative medical route with the girls (see
Resources), and while we know this is not for everyone, it has been wonderful for us and for them.  Aside from a hospitalization for Rotavirus and a subsequent visit for a g-tube placement when she was 3 years old, Claire has been very healthy all her life, and for this we are SO grateful!  We fully believe that love plus her healthy lifestyle has contributed to her longevity.  She is fed many fresh, organic, raw fruits and vegetables (thank you, Vitamix Blender!) as well as other natural supplements to optimize her life.  We try to remember that her body has the same abilities as ours does to heal, repair, and "do its thing."  Some view her life/body as "less than" or as "compromised," but we are 100% convinced that Claire is one of the healthiest, happiest people we know.

Despite being very small for her age (23 pounds at age 12.5!!!  WOOHOOOOO!  We have fought for every ounce!!!), Claire has touched so many people's lives and changed ours in a way we cannot describe.  She is also a little sister to Cal & proud big sister to Lola, who was born in 2006 with the same condition.
Working on crawling during physical therapy with Angela & her doggie brother, Cash
April 2014

December 29, 2015

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