Bath time at Angie Sutphen’s house includes a musical interlude or two for her six-year-old daughter, Charlotte.
Although she can’t sing or dance, Charlotte loves it when her mom moves her little arms in time with the music.
“We call it Cha Cha’s spa,” Sutphen said. “We have a roll in shower and she has a gurney so she’s lying down. Barry Manilow is playing and we’re washing her and singing. It’s just hysterical.”
Some days are just better than others.
“It’s a journey,” she said.
Charlotte, nicknamed Cha Cha by her 12-year-old sister, Maddie, has a progressive neural muscular disease that affects her brain and her muscles. Although she isn’t able to speak, she is able to communicate through facial expressions and eye contact. She smacks her lips to imitate kisses, according to Sutphen.
When Cha Cha suffered a cardiac arrest before she was two, she spent almost six months at Children’s Hospital. Upon her daughter’s homecoming, Sutphen said she wanted Shoreline Fire Department personnel to be aware of her daughter’s delicate condition.
“We went in with a baby who could breathe and we came out with a baby who needed specific care,” she said. “The first thing I did when we got home was go to the fire department and thank them for all they had done, introduce myself, take a picture of Charlotte and tell them about her.”
Her story stuck with Shoreline firefighter Jason Howton, who initially met Cha Cha while responding to an aid call. In August, Howton asked if Cha Cha could be the sponsor patient for a Shoreline team in the 5K Tunnel to Towers Run/Walk in New York City on Sept. 28.
“I just thought how neat it would be to help a family in the area I serve,” Howton said. “That’s why we asked them to be the sponsor patient.”
It was only by coincidence that Sutphen, her husband, Paul, and other members of her family planned to travel to New York during the same time as the benefit run.
“I told them, ‘You are on the Shoreline Fire Department team and you are going to run with us,’” said Howton, who is participating in his third Tunnel to Towers run.
As part of the annual run that pays tribute to the 343 New York firefighters who perished on Sept. 11, 2001, teams raise funds for an organization of their choice. Although the Shoreline Fire Department regularly chooses to raise funds to benefit Children’s Hospital, this time is special because the team members are all familiar with one patient from Shoreline.
The Shoreline Fire Department team, also know as Cha Cha’s Heroes, will arrive in New York City on Sept. 26. The team of four firefighters and two nurses will continue to raise money for Children’s Hospital in advance of the event. Donations can be made at any Bank of America in the Children’s Run Fund account.
While Cha Cha’s Heroes ready for the run, the little girl they have all come to adore and who had faint hope of reaching her fourth birthday will continue to receive treatment to strengthen her bones.
“Charlotte will do what she wants,” Sutphen said. “She likes nothing better than to prove everyone wrong.”
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