Standing Strong

standing-strong-see-what-i-can-do-watercolor

14″ x 20″ Watercolor on Paper

Part of the “See What I Can Do!” series of paintings

A champion for children who are different from “others”. A champion who has overcome her own challenges to climb mountains. An author (with her mother), she wrote a book about not being a bully, but being kind, with the title, “Be Kind, Silly”. A speaker and presenter, unafraid of spreading her message about being kind in front of hundreds of children at an elementary or middle school, or in front of many adults in her state’s legislature. All before she turned 10 years old. She is standing strong.


How do you describe someone that is just so amazing, she brings peace and calm and kindness to those around her? How do you even start to explain to others that a person can take on life’s challenges and use it to turn her own life into something amazing and help to make others’ lives amazing too?


Lily has a rare disorder (Ehlers-Danlos Syndrome Hypermobility Type). But that does not define her. It has helped to shape her to become who she is, but she transcends description. Standing up for herself, and others that deal with rare diseases or other special needs, she turns those “special needs” into opportunities. She has become a hero to many. Too many to count.


No, she is not perfect. We all have bad days. Some days are hard to get up in the morning or to get through the day. But her overwhelming love and care for others lifts her above those bad days, and takes her to a different level.


In this painting, Lily is shown as a super hero in a cape, holding out her hand, helping a quail to find its wings to fly. Just as Lily gives strength to others, helping them to fly on their own, or with the help of family and friends. May we all be like Lily, super heroes for others.

Ehlers-Danlos Syndrome

Classical Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder that is caused by defects in a protein called collagen. Common symptoms include skin hyperextensibility, abnormal wound healing, and joint hypermobility. More than 90% of people with classical EDS have mutations in COL5A1 or COL5A2, two genes which encode type V collagen. In rare cases, mutations in the gene encoding type I collagen, COL1A1 gene, may be found. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving associated symptoms.
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