She is survived by her parents, David and Marcy Sookne; sisters, Keren and Alisa; and grandparents, Hal and Rona Lemberg. from the Culver City News. Daniela Shiri Sookne faced extraordinary challenges during her 17 years of life, which ended last week. But not before she left a memorable imprint in her Culver City community.
Diagnosed as an infant with Familial Dysautonomia (FD), a neurological, degenerative, fatal genetic disease present from birth, this girl's petite, childlike stature was countered by her gigantic determination to live her life to the utmost and contribute to the well-being of others.
Daniella Sookne in her Challenger Little League uniform.
A newborn with FD has a 50 percent chance of reaching age 30, a life characterized by myriad problems, including poor growth, feeding difficulties, vomiting, lack of response to painful stimuli, seizures, fevers, unstable blood pressure, poor coordination, fainting, and more. This results in an unthinkable existence for these children and their families as they live with the certainty of increasing disablement and early death.
Daniela's last act, noted her mother, Marcy Sookne, was to give "a last gift - she is saving the lives of five children by donating both her kidneys, her lungs, and her liver, which are miraculously, if not a little ironically, working absolutely perfectly."
Her death, her mother said, "was a sudden event, in which she was immediately unconscious, and did not suffer. The previous weekend she had one of the best weekends of her life. Daniela would want everyone to remember her with joy because she was a very joyful child with a seemingly endless smile.
"Her high school counselor, Steven Gyepes, wrote a touching letter to our family about the lasting impression she left on him. He saw her walking behind two boys she obviously knew well with quite a bit of banter going back and forth, and he remembered Daniela's smirk as she was getting in the last word. He was so taken by her feisty spirit that he laughed out loud, surprising the three students that a school official was eavesdropping on their conversation. The boys appeared embarrassed but Daniela just smiled from ear to ear as if she knew that he appreciated her ability to stick up for herself."
David Sookne, Daniela's father, talked about how Daniela's spirit seemed to bring out the best in people. "Despite her difficulties, Daniela always wanted to participate rather than watch. People were strongly affected by her attitude and helped her to join in. I'll give you just two examples, one early and one recent. In kindergarten at recess some kids were playing tag. Daniela tried to play but couldn't move very fast so the kids, on their own, placed her on a piece of playground equipment so that they could run under her and she could try to tag them.
"Then recently she was invited to a sweet 16 party thrown by two girls. Being invited was a huge surprise, since Daniela was 17 years old, but only 11 or 12 if you were to judge by appearance. One boy, who played the lead role in many school plays, danced with her all night. He is roughly 5-foot-9 - and Daniela was 4-foot-5. He could have danced with anyone, but he made her feel like Cinderella with Prince Charming."
A friend of Daniela's, Cindee Zisner, knew her from when she was 3, through older sister Alisa. "Daniela participated a lot as a ‘tag along' in Alisa's Girl Scout Troop 607 and sold cookies," Zisner said. "She had a feeding tube and was frequently in the hospital with seizures and pneumonia. The last three years she had to have a portable oxygen tank, but she was determined to participate in everything.
"She took ballet and dance and belonged to the Challenger Little League, which is Culver City's Little League division for children with disabilities. They play every Saturday at Culver City High School. The kids have ‘buddies' who are able-bodied children and adults who assist them at these sports events. I remember when Daniela and I were talking about someone on the team who had a cane and I asked Daniela if she wanted a Girl Scout buddy. She was pulling around an oxygen tank at that time and she just smiled, pointed at it, and said, ‘That's my buddy,' meaning that the other child had a cane for a buddy and she had her oxygen tank."
One of Daniela's most memorable experiences, Zisner recalled, "was when Chai Lifeline, which helps kids with chronic illnesses have some fun, sent her to New York to spend a week at camp. She loved it!"
Zisner added: "She was a remarkable girl, very sweet and very determined. She went to regular public school classes in Culver City all of her life and was a student at Culver City High School, participating with her peers, until the last few months, when she became too frail to continue."
Pam Snodgrass, the leader of Girl Scout Troop 878 to which Daniela belonged for the last two years, was impressed that "Daniela, with all her difficulties, still did so much. She was a joy to have around and had a smile that lit up her face. She persevered because she wanted to belong, to be one of the girls, and she succeeded because the girls treated her normally. She brought an awareness to a lot of kids and imprinted them greatly."
"I knew her from the time she was in preschool because I used to baby-sit a little boy who was in preschool with her," said Rise Glaser. "She was cheerful, a sparkling, very bright little girl with a dazzling smile and a sunny personality. That infectious smile of hers lit up every room and every mood."
Michael Glaser, her husband, added his comments: "My Masonic lodge has been supporting Challenger Little League by providing uniforms and equipment for more than five years, and I go to the Saturday games to cheer them on. Daniela was a joy to watch. With all of her problems she was still out there smiling away and inspiring the adults and the kids. At the end she could be really tired but she'd still have that perky smile."
Monique Van Gerwen, whose late husband was district administrator for Challenger Little League, spoke of Daniela with fondness and admiration. "She was a real go-getter, a delightful little girl who joined several years ago and was playing right up to the end. I would sometimes ask her, ‘Sweetie, are you okay, are you tired, do you want to stop?' She would say no and would continue to stay right in there."
Five years ago Camille Jones, Disabilty Services specialist with Parks, Recreation & Community Services, decided to teach the Girl Scouts about children with disabilities. "At that time, Daniela was already a Brownie and very active," Jones recalled. "Then four years ago, with wide support from various community groups and the city of Culver City, we were able to create the annual carnival for disabled children and their families, which is held in October during Disability Awareness Month. Daniela, a wonderful child, became very involved."
Debbie Cahill, senior programming specialist with Parks & Recreation, remembered how Daniela insisted on being part of the older girls' leadership team in Girl Scouts. "She would man the booth with one of the older Girl Scouts at the October carnival," Cahill said. "She thrived on being actively involved. This enabled her to satisfy her goals of community service and civic involvement that were so important to her.
"She had an opportunity to be a leader in helping others, which she was able to exercise because of the wide array of activities available in Girl Scouts. For example, they collect hearing aids for reconditioning and recycling to low income recipients, volunteer at senior center events, including parties we host for people with disabilities, and run game booths at the October carnival. They also help at Relay for Life, the SIDS walk and events for the junior blind, and collect clothing for veterans."
Cahill emphasized that "the family support Daniela received was beyond anything anyone could ever imagine, and the quality of her life was remarkable because of it. She was an inspiration and a positive influence to so many people."
Bearing out Cahill's statement, Daniela's sister, Alisa, is now studying occupational therapy. Additionally, several girl scouts have expressed interest in forming a team to walk in Daniela's memory at the Spring Walkathon being hosted by the Cure FD Foundation on April 22 at Marquez Charter School in Pacific Palisades.