Two weeks before Ella Claire was born, a routine ultrasound discovered that her head was enlarged because it had extra fluid. One doctor said he could not even see a formed brain on the ultrasound, and that Ella Claire would not live. The doctors performed an emergency c-section. Scans that followed showed that she did in fact have a formed brain but that she had suffered a severe stroke in the womb. The stroke affected the right side of her brain the most, which controls the left side of her body.
The biggest challenge for Ella Claire as a mid-brain-injured child was her mobility. As she grew from baby to toddler, her left leg became stiffer and her left hand and arm grew more rigid. Also, by the age of two, Ella Claire didn’t talk, wasn’t very responsive, and her vision was significantly affected as her brain had difficulty controlling her eyes. She could only smile with the right side of her mouth. She had made little to no progress with traditional medication and therapy. So, Ella Claire’s parents, Dean and Susan, decided to try another option for their daughter’s brain health and wellness. And with it, came hope! They found the Institutes for the Achievement of Human Potential, based in Philadelphia. The Institutes for the Achievement of Human Potential is a nonprofit institution founded by Glenn Doman in 1955. The Institutes are internationally known for their pioneering work in child brain development and for their programs to help brain-injured children achieve wellness. The Institutes exist to insure that all brain-injured children have a fighting chance to be well. Their goal is to help parents treat their children at home.
After two years of doing this home-based program with Ella Claire, she made incredible progress. By age four, she could crawl, talk, feed herself, read and do math, play melodies on the piano, and increasingly use her left side. She was learning Spanish and many different subjects. Geography was a favorite, and she had almost completed learning all 50 states and capitals. When she was six years old, Ella Claire took her first independent steps! This was a much-awaited and much-celebrated milestone that many experts thought would never be possible after her grim prognosis at birth. Dean and Susan were, and still are, constantly amazed at how Ella Claire persevered toward her goal of walking without ever giving up. Underneath her very sweet and gentle demeanor is a determination of steel!
Ella Claire turns 11 next month. She is perfectly healthy. She is continuing with her home-based therapy and daily learning new things, as well as doing chores alongside her other four siblings. She is fluent in Spanish and is learning French, too. Her heart to love people completely overflows the moment you meet her. She is the definition of a social butterfly! Ella Claire has taught the entire family about perseverance, encouraging others, unconditional love, and living with a joyful and thankful heart. “She has given the most special gift to her siblings Hannah Grace, Gracie, DJ and Luke—and that is the gift of mercy, compassion and gentleness. They have learned so much from her!” says Susan.
Ella Claire has touched so many people’s lives. As a family friend, I have been touched by Ella Claire’s tender heart and genuine love. I’ve been touched by watching Susan and Dean love their children well in the face of trial. I’ve been touched by the way Hannah Grace, Gracie, DJ and Luke love Ella Claire well and love each other well. I, and so many others, have been touched by their HOPE. Hope in the face of fear. Hope in the face of sadness. Hope in the face of seeming impossibilities.
I asked Susan what she’d want to say to families walking through what the Wilson’s walked through nearly 11 years ago and all this time in between. And she said, “The most important thing is hope! Parents in our situation don’t hear it much when they have a brain-injured child. So, have hope! Look where Ella Claire started and look where she is today, and where she is going. We’re hopeful for Ella Claire.”
Dean’s and Susan’s life verse for Ella Claire is Matthew 21: 18-21; indeed the Lord can move mountains. And a side note for those that know Ella Claire; she asked that this interview be translated into Spanish.