"Kids with Williams Syndrome are incredible children and adults," said Jen Soutos, Alexi's mother. "They love life and people.
The result of deletion of the seventh chromosome sometime during pregnancy, among the traits of those with WS are extreme friendliness, expressive language skills and empathy.
"Most kids with WS have some developmental delays and the ranges can vary depending on the deletion. They are not savants at music, but music lights up their life."
Heart problems, dental and kidney abnormalities, feeding difficulties and extreme politeness are also some expressions of Williams Syndrome, according to the Williams Syndrome Association based in Clawson, Mich.
"She could sense when someone was having a bad day or was unhappy," said Soutos, who lives in West Whiteland with her husband Alex and daughter, Jaime, and is a teacher at Great Valley High School in Malvern.
"It took her longer to learn things such as climbing a hill or walking barefoot in the grass, or painting because of tactile sensitivity but she did it all. (It) just took a little longer to get used to," said Soutos. "It was hard for us at first because she had some health problems we had to learn to deal with such as reflux or tactile sensitivity, and she threw up a lot if she saw something gross."
Many people weren't aware Alexi, who was born in July 2000, had WS until after she died. Signs of the condition, which can vary, include a larger space from one's nose to the mouth, similar smiles, and, as in Alexi's case, they can develop scoliosis.
"Her back was over 90 degrees and she needed to have something done. She was not bothered by (it), but she started developing pneumonia more often because her left lung was being compromised from the curve.
"She died within the first five to 10 minutes (of the surgery process): due to the anesthesia, her heart went into an arrhythmia and her heart stopped."
The little girl with a friendly disposition left behind many who cared about her.
Alexi had been a student at Starkweather Elementary School in Westtown before her death. The school will dedicate a bench in her memory May 18 at 4:30 p.m. on its playground. May 24 will be the ceremony's rain date.
"Alexi was a magnetic and inspirational little girl who brightened our classroom at Starkweather," said Loree Boyd, an early intervention teacher. "She loved to run with her friends and every day she would call, 'Can't catch me, bet you can't catch me!'
"The classroom parents raised the money for the memorial bench and worked with the children to decorate it with colorful handprints. The bench will be a lovely reminder of this precious little girl."
The Chesterbrook Academy in Exton, which Alexi had also attended, purchased a music cabinet. Families donated compact discs and tapes, headphones and CD players and it is now known as the Alexi Soutos Music Library.
On Sunday, May 21, the Lionville Community YMCA at Eagleview in Exton will host the Lexi Soutos Family Fun Run/Walk. Registration begins at 8 a.m.; the walk that begins at 8:45 a.m.
"It is prior to the Relay for Life and the money raised will go to the YMCA where Alexi went for awhile," said Soutos.
Makin' Music Rockin' Rhythms, a music and movement program Alexi attended that is based in Media, will stage a concert Makin' Music Celebrates Alexi Soutos, from 4 p.m. to 5 p.m., June 10 at the Great Valley Middle School in East Whiteland. Proceeds from the concert, including those raised through raffles and vendors, will support the WSA.
"When you thought of our family, people knew Alexi, not us," said Soutos. "She loved people and music and it is a tribute to her love of music and people and raising money for the Williams Syndrome Association is our family giving back to a wonderful support and beautiful children with Williams Syndrome.
"We want this concert to be huge. My Alexi was little, but so huge to everyone she met and touched."
While some organizations initiate awareness events in large part for disease preventions, with Williams Syndrome, awareness events also draw attention to a disease that remains far from the headlines and was only initially recognized as a unique entity in 1961.
"There are many kids who are very mild with Williams Syndrome that don't get diagnosed right away because doctors don't know," said Soutos.
For more information about Williams Syndrome, visit the WSA Internet site at www.williams-syndrome.org.