News
I hope you dance: the story of Kaitlin's wedding
Lace-wrapped potpourri, heart-shaped soap and picture frames are among the most popular wedding favors.
But for their wedding, Kaitlin Boyd and Patrick Kelly of Long Island, NY, wanted keepsakes that would make a lasting impression.
So they came up with an idea: they and Kaitlin’s parents would make a $500 donation to the Alpha-1 Foundation instead.
“We had always discussed what the favors for the wedding would be. We weren’t really crazy about the favors we had seen,” said 25-year-old Kaitlin.
“It was neat in that we got to share a little bit of our family and the reasons why we would choose the Alpha-1 Foundation to represent that day.”
Kaitlin is an Alpha-1 carrier. Her mother, Elise Boyd, is a classic Alpha with the ZZ genotype, but has no symptoms. Kaitlin’s uncle is an Alpha on augmentation therapy. Her aunt underwent lung transplant surgery in February, 2008. Her father Robert has no Alpha genes but attends Alpha-1 education days with his wife.
Kaitlin and her aunt, Maria Loss, who has had a lung transplant
“It was just amazing how much it was affecting all of our lives,” Kaitlin said.
Many of her wedding guests weren’t aware of Kaitlin’s family history, nor did they know what Alpha-1 Antitrypsin Deficiency was.
That is, until the ceremony in June.
Instead of party favors, displayed at every table were cards inscribed with the Alpha-1 Foundation mission statement. While the newlyweds visited each table greeting their curious guests, they answered questions about the theme and the condition.
Kaitlin’s uncle, Karl Fuchs, whose lung function test scores have actually improved since he’s been on augmentation therapy, remembers the comments. “It was like a big surprise. Everybody was talking about it, what a great idea that was, putting her money to good use.”
Kaitlin’s aunt, Maria Loss, who had the lung transplant, was especially moved by the gesture. “Oh my gosh, I had tears in my eyes, and other people did too,” she said.
Maria, Elise and Karl are siblings with an even closer bond than usual because of their shared deficiency. But Kaitlin’s grandmother, Martha Fuchs, feels a sense of guilt for passing on an Alpha-1 gene to her children. “Honestly, we’ve had our ups and downs,” said Maria. “It was extremely hard for the entire family.”
At the wedding, Kaitlin and her mother danced together to a Lee Ann Womack song whose lyrics Elise treasures, I Hope You Dance.
A part of the song:
May you never take one single breath for granted…
And when you get the choice to sit it out or dance,
I hope you dance
I hope you dance
So for the rest of the evening the family danced. Even 86-year-old grandma joined the fun.
Kaitlin and her mother, Elise Boyd, dance at her wedding
Maria used her two new lungs to cut lose on the dance floor; she was barely able to walk 10 feet a year before.
“My husband had to say to me, ‘Maria can we sit down? I need a break.’ He needed a break and I didn’t!”
During the wedding, fears and concerns seemed to disappear. It was a time of celebration.
“We weren’t thinking about any of the bad things that come with Alpha-1,” Kaitlin said. “Only good things, like having your family members still alive.”
Kaitlin and Patrick Kelly on their wedding day.
