FOND DU LAC — Students at St. Mary’s Springs Academy in Fond du Lac celebrated the Solemnity of the Epiphany in a special way this year: by presenting the family of local 5-year-old Lydia Spoor with a check for close to $5,000.
The money, generated from the school’s long-running annual Christmas card fundraiser, will be used by the Spoors to pay for the training of a service dog for Lydia, who was born with Down syndrome and suffers from a host of complicated medical issues.
“It’s amazing for us – it takes a huge stress off,” said Tiffany Spoor, Lydia’s mother, of the donation, adding the money will pay off the balance of service training for the family’s new golden retriever, Sunshine.
The Spoors, who attend Calvary Bible Church in Fond du Lac, were made known to SMSA faculty by family friend Barb Piatt-Kain, whose children attend the school. Piatt-Kain, a parishioner at Holy Family Catholic Church, heard the family was struggling to find money for Sunshine’s training.
“I just couldn’t believe how much it cost, and I know they’ve gone through so many trials with the unique health needs of Lydia,” said Piatt-Kain. “It just touched my heart and I couldn’t let it go. I feel God just kept pushing me, you can do something, you can make something happen here.”
Piatt-Kain wrote to SMSA fourth-grade teacher Jill Staerzl, who was coordinating the school’s annual Christmas fundraiser. Each year, students in grades three through eight create Christmas cards in their art classes to be sold after weekend Masses at Holy Family.
“I just thought that kids could identify with helping get a child a dog, and especially a service dog,” said Piatt-Kain.
After the Spoors were chosen as the fundraiser beneficiaries, Tiffany and Lydia visited SMSA to give a presentation about Lydia’s health issues to the students who would make the cards. It was the first year the students met the beneficiary, and “it made it real for them,” said Steve Kelnhofer, associate principal of the SMSA elementary school.
“The students actually got to see this 5-year-old, who is obviously a lot smaller and carrying around an oxygen tank and things like that,” he said. “The kids were quiet during the whole thing; it was amazing, just taking in this little girl and her story. The cards they came up with, I think, are beautiful because they had that image in their head and their heart at the time.”
“Lydia was just a hoot,” said Piatt-Kain. “She was high-fiving all the kids. They loved her.”
A baby made for them
The Spoors have known since 17 weeks before Lydia’s birth that her life would include some unique challenges. That was when prenatal testing revealed to Tiffany and husband Eric that their child had a higher-than-average chance of being born with Down syndrome. A subsequent ultrasound showed birth defects – issues with her stomach, esophagus and heart.
But Tiffany and Eric, already parents to daughters Erin and Allison, did not despair. They explained to their older girls that the baby was sick, but that it had been made perfectly by God, especially for their family.
When Lydia was born on July 25, 2011 at Children’s Hospital in Milwaukee, it would be just the first step for the family in a long and difficult journey. They wouldn’t be able to bring their baby girl home for six months, and over the next six years Lydia struggled with a host of health issues that make day-to-day family life unpredictable, expensive and emotionally draining.
In addition to Down syndrome, Lydia suffers from congenital heart disease (AV canal defect) and esophageal atresia, which means she is missing most of her esophagus. She has undergone surgery to pull her stomach up into her chest and to connect it with what exists of the esophagus; it is then run behind her heart and attached to her diaphragm. Complications resulting from the surgery have led to chronic lung disease for Lydia as well as many infections. Several times after surgery, she went into cardiac arrest.
“Her lungs never fully expand – there simply isn’t space. It means that a common cold for her will take her down harder and faster and longer than most kids,” said Spoor.
And yet, the family’s is a life of great joy, Spoor told the Catholic Herald in an interview last month. This baby has brought a dimension to their existence that they cannot imagine surviving without.
“She’s just got that personality, that smile. It’s a warm smile in a world that has turned so cold,” she said.
Dog will help with ‘spells’
Lydia also likely suffers from a form of dysautonomia, an umbrella term that refers to several medical conditions that cause the central nervous system to malfunction. This leads to Lydia experiencing what her mother calls her “blue spells.” These are medical episodes where Lydia’s whole body goes into a type of hypothermic shock, causing her to lose consciousness, experience shallow breathing and a plummeting heart rate.
These blue spells are what Sunshine is being trained to help with. Last summer, Spoor noticed the dog was able to anticipate when Lydia was about to lose consciousness. That early detection is key for effectively preparing medical supplies and resources to deal with the episodes, said Spoor.
Sunshine will also help calm Lydia during and after her frequent trips to Children’s Hospital, and will hopefully improve her sleep, which currently only lasts about three hours each night.
“They deal with so many things I just don’t understand, and I’m baffled by people who have to live with that constantly, and that’s just their reality,” said Piatt-Kain of the family.
‘A teaching moment’
Kelnhofer called the fundraiser a “teaching moment” for his students.
“Part of St. Mary’s Springs Academy is faith, and being servant leaders, and teaching the children that it’s about giving, it’s about how you can share your love and share your service with others,” he said. “Jesus came to give himself and we are, too, called to give ourselves to others.”
Lisa Krusick, who has children in third and fifth grade classes at SMSA, volunteered with her family to sell the Christmas cards after Mass one weekend in December. Lydia’s story touched the hearts of her children, she said, especially because their late uncle also suffered from Down syndrome.
“The kids were really excited to help because they had talked about her in school already,” she said. “Any time they hear about someone with Down syndrome they get really excited. Somebody just like their Uncle Tim.”
Krusick said the Spoors’ story was equally impactful to the parishioners who donated. Details about Lydia were shared at weekend Masses and in the Holy Family bulletin.
“All the people were over-the-top generous – some people didn’t even take cards, they just wanted to help a family in need,” she said. “Everybody said to keep the change.”
‘These kids have a place’
Tiffany Spoor hopes her daughter’s story will educate the public about special needs children and their place in society.
During her pregnancy, said Spoor, many health care professionals encouraged her to abort Lydia, and in the years since have pushed the idea of institutionalization for her daughter.
“We had nurses who told us that it was wrong to do what we were doing. We had a doctor who told us to institutionalize her because she was nothing,” she said. “Countless times we’ve been out in the grocery store or wherever and people have told me that it’s a disgrace that we ever let her come into this world … that we drain the economy and are making her suffer.
“One thing you learn is to trust God, and to say, you gave me this child, we will raise it according to what you want, and we need you to provide for us,” she added. “That is hard, and when you do hear comments about how they’re a drain on society, it does (hurt). It’s the devil tempting you to think, are you doing the right thing here?”
But Lydia does not suffer, she said. “She definitely endures more pain than most people do, but she doesn’t suffer at all. Her life is so full. Her sisters, on a daily basis, will say, Mom, I’m so glad Lydia’s my sister.”
And furthermore, she said, vulnerable individuals like Lydia have an important role to play in this world. “Other kids can learn as much from Lydia as Lydia can learn from them,” she said.
At her older sister’s swim club, Lydia has become the “honorary high-five swim coach.” Every practice, the swimmers line up for high-fives from Lydia, and she is included in all team pictures.
“It’s something that all the kids, from seniors in high school to 5-year-olds, have come to appreciate – this is Lydia and she encourages us, and she brings a smile to our face,” said Spoor. “These kids have a place. It might not be the same place you and I have but they definitely have a place.”
When one of the students at SMSA asked Spoor why Lydia suffered the way she did, her answer was inspiringly simple.
“This is just the path God wrote for Lydia, just like God wrote brown eyes for you, or blue eyes or curly hair,” she said. “A surgeon had told us early on that she was born with a defect and no matter what we do we’re never going to make her whole. Only God can do that. But we are all born that way. Lydia’s is just physical.”