OTHERS

Tiny Girl Mighty Smile Despite Cornelia de Lange Syndrome

Rare Disease & Syndrome

Ariel

This is Mila: Fighting Cornelia de Lange Syndrome

This is Mila, our beautiful, tiny but mighty, soon to be 3 year old. Mila was given the diagnoses of Cornelia de Lange Syndrome at the age of 3 months. Our family was devastated not knowing what our little girl's road ahead would look like, but we soon learned to forget the "what ifs". As a family we live in the moment. We cherish every little milestone.

Mila is a fighter, despite all odds against her. She has overcome many obstacles in her short three years, and tends to do it her own little way. One of Mila's major achievements recently is walking. Mila does not walk, but runs with the help of her doll stroller and she has also taken a few steps on her own. Her speech is a struggle because she is nonverbal. We have made progress with sign language and without a doubt I know our girl will continue to figure out how to communicate with the world with the help of communication tools, hand gestures, smirks, smiles, and eye rolls.

Learning & Living with Cornelia de Lange Syndrome

Food is Mila's all time favorite word because she loves to eat desite her low weight of 17 pounds. This was a huge worry when first being given Mila's diagnose of CDLS as there can be an endless list of gastrointestinal issues along with many other health problems. As Mila's biggest advocates, we learn more everyday about the needs of our child through doctors, specialists, other families living with Cornelia de Lange syndrome. However there is no written handbook for each child, and sometimes we have to teach the doctors and specialists. 

The real teacher in this journey is our Mila, and it took us a while to realize that. Our little peanut has one of the largest, most contagious smiles. Mila is a powerhouse, regardless of her size. She has taught our family and everyone she surrounds not to put limits on her. We have learned not to dwell on her diagnoses, and not let it define who she is. The twinkle in her eyes, the million dollar smile, and the affection Mila shows towards her sister and the rest of the family says so much more than any diagnose given. Don't sweat the small stuff, live one day at a time, and never give up hope for your child because they will never stop amazing you. 💜 Mila's parents

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