Caroline Vetter is hoping to be welcomed by a sea of royal blue 'Super C' T-shirts Saturday when family and friends gather in Rendezvous Park for a very special party to help celebrate a very special day - the little West Fargo girl's fifth birthday.
She will be joined by her dad and mom, Tyler and Abigail; her two brothers and sister, Andrew, 9, Ben, 7 and Danielle, 2; grandparents, Leo and Joanne Vetter from Bismarck and Jim and Roseann Burkett, Sioux Falls; Tyler's brother, Toby and his wife, Deb, from Moorhead; and a passel of other friends and acquaintances intent on offering up a variety of birthday greetings.
What makes this occasion so emotionally bittersweet is the fact it could possibly be Caroline's last birthday, as she is suffering from Leukodystrophy ( a brain deteriorating disease) and Lennox-Gastaut Syndrome (an advanced form of epilepsy) that is slowly but surely robbing her of life-sustaining abilities. "We will try and celebrate her birthday in a big way because it will likely be her last," her mom Abigail said sadly. "She won't be able to enjoy other bigger observances, so we want to take this special moment and celebrate all that she has accomplished in the last five years and show her all the love we have for her while she is still with us."
Caroline's story begins at birth, born five weeks prematurely Aug. 28, 2002, and weighing in at only four pounds. Shortly after going home, it became obvious that all was not right. At six months she was diagnosed with Cerebral Palsy, but continued to develop at her own pace and by 18 months was walking with a walker, talking fine and appeared to be developing normally cognitively as well.
All that changed when Caroline turned 2 ½ and experienced her first seizure on Valentine's Day. What followed were several life-threatening seizure events that required her to be flown by LifeFlight to St. Paul Children's Epilepsy Unit multiple times. Christmas 2005, she was diagnosed with Lennox-Gastaut Syndrome, a rare, severe type of seizure disorder characterized by difficult to control seizures that slowly diminish cognitive abilities.
In April of 2006, doctors nullified the Cerebral Palsy diagnosis after discovering something new - Caroline's brain was beginning to atrophy (shrink) and she had dangerously high levels of ammonia in her blood. Initial testing didn't reveal any causes and it wasn't until Caroline went into a huge metabolic crisis after a tonsillectomy/adnoidectomy in February of this year that further testing at Mayo Clinic revealed she has Leukodystrophy - a disease that causes the white matter of the brain to disappear. There are 34 different types of Leukodystrophy and it is believed that Caroline has Vanishing White Matter Disease. They also discovered that the high ammonia levels in her blood are a result of a metabolic disorder, most likely a form of Urea Cycle Disorder.
Because both are rare genetic diseases, the doctors think that it is highly unlikely that she would have two of them. Therefore, they think that Caroline most likely has some new form of Leukodystrophy that has a metabolic component involved with it. This disease is neurodegenerative, and Caroline continues to have uncontrolled seizures - at least 30 a day, and often reaching the 100-plus range. She is on six different anti-seizure medications and is often loaded with many high potency drugs to stop seizure activity.
Caroline also has an implanted vagus nerve stimulator which sends electrical impulses to her brain in an attempt to short-circuit the seizure activity. The seizures have impaired her vision, her mobility, her ability to eat, and her ability to enjoy many of the things that other five-year-old children enjoy.
"We call her Super C because she has more implanted equipment and hardware than most super heroes and a strength and determination that most people are in awe of," Abigail said proudly. "she amazes all those who meet her."
Caroline's most recent setback saw her hospitalized in MeritCare for a month - a continuous status seizure that required her to be placed into a drug induced coma in an effort to stop it.
The good news was that she awoke from the coma, the bad news was the seizures had not stopped.
Caroline is now back at home and has periods of time when she is more alert and more herself, talking and being playful, but the reality is she experiences seizures every thirty seconds and there is nothing more that can be done for her medically. As a result, she has been admitted to the Hospice program and with the help of home nursing care and Hospice, the goal is to make Caroline comfortable and to allow her to enjoy every day that she has. "Her deterioration will continue to be a steady process, and it is robbing her of everything that she worked so hard to attain," Abigail explained. "We want to be able to care for her at home until the very end for her, and we would like to make her as comfortable as possible. It is so hard to watch her struggle and to see her body deteriorate. We love her so very much, so we are doing everything within our power to help her. Although we shed tears of anguish for Caroline every day, we are also so very thankful to have had her as part of our family. She has taught us so much about strength, perseverance, determination, and love. She has changed our lives forever, and those that have been blessed to know her come away with a piece of her still within their heart. She is a sweet and spunky girl who loves to be with the people that love her the most - her family and friends. She loves to swim, listen to music, play with her toys, draw, read books, and she collects all kinds of ducks."
Yes ducks. The little girl is intrigued by ducks. The infatuation began when Caroline was an infant and her Poppa Jim gave her a stuffed duck as a present. She loved that duck and when she did her therapy it was the only thing that motivated her and made her smile. From there, the duck craze took off; she kept receiving them and now has a collection numbering well into the hundreds.
As for the Super C nickname, the Vetter children's names are alphabetical, so after A (Andrew) and B (Ben) they called her C. Add that to the number of implanted devices she carries around as the 'bionic girl' and it all quickly morphed into super hero and Super C.
"Even though Caroline has seizures, they do not have her. She is indeed like a super hero," Abigail said. "She has amazing strength and keeps coming back for more, pulling through from episodes we never thought she would. Through it all, C has taught us how to smile in the darkest times, to never give up and how to keep going in spite of the times."
The Vetter family has also been buoyed by the wonderful support from family and friends. "Our faith and our church community have inspired us immensely," Abigail said. "Our strong faith in God is carrying us through this trial and we pray for the best quality of life for Caroline while she is here with us."
Abigail asked that those attending the celebration on Saturday not bring gifts, instead contribute a freewill offering, if they so choose, that would be applied toward some of the items needed to improve the quality of life during Caroline's remaining time, like a new wheelchair and a bath lift.
She also asks that everyone who has them wear their Super C T-shirts to the party. Abigail said that J&L Sports was a generous project partner and she offered kudos to Meg Roth of Cottage Grove, Minn., who designed the Super C logo which also now graces a water park at the Rochester Family YMCA in Caroline's honor.
Make-A-Wish has also been wonderful to Caroline and her family, recently granting them a weeklong trip to Walt Disney World in Florida, where they were able to enjoy all the Disney Parks, Sea World and even squeezed in a day trip to the beach. "It was a trip of a lifetime and Caroline enjoyed it immensely," Abigail said. "Her favorite parts were riding the tea cups at the Magic Kingdom, meeting Donald Duck and getting his autograph, and splashing in the ocean. After we returned from the trip, Make-A-Wish officials saw a picture of Caroline on the beach and asked if they could use it on one of their cards that are sent out nationwide. Now whenever anyone makes a donation to Make-A-Wish, they receive a thank you card with Caroline on the cover. It really is a special honor for her to represent Make-A-Wish and the wonderful things that they do for children who are battling life-threatening illnesses."
Another recent high point, was the active role the Vetter family played by participating in the Epilepsy Stroll in Fargo's Lindenwood Park that benefited the Epilepsy Foundation of Minnesota. Caroline was doubly honored as a 'shining star' - a representative of kids who have epilepsy and are living their lives with seizures; and by her 'Super C' network of over 100 supporters, marching alongside her in their bright blue shirts, ultimately capturing the spirit award.
Caroline will also be pulling off two other big firsts, as a Kindergarten student next week in the Early Childhood Center classroom of Bobbie Jo Schaefer, the same instructor her two brothers enjoyed; and as a flower girl in a wedding Sept. 1. Right now Abigail is thrilled to be caught up in sewing the dress her daughter will be wearing for the joyous occasion. She is going to be beautiful in red and ivory," Abigail beamed. "I just have some finishing touches and the final fitting to do on her and then she will be good to go. She will be rolled down the aisle in her wheelchair by the bride's three sons, who are fighting over the privilege to do so. Her chair will be draped in tulle and have swags of flowers on it. She is going to be beautiful, and I just think that it is so great that she will get the opportunity to be part of a wedding."
On that upbeat note, Abigail said she is so looking forward to her daughter's birthday party on Saturday. She encourages everyone "to drive out to Rendezvous Park, meet C, share her huge smile, discover who she is and have a great time."
The Birthday Bash Benefit will run from noon to 3 p.m. in the Main Shelter at Rendezvous Park in Eagle Run, just off 32 Ave. S, rain or shine. There will be food (hot dogs, chips and pop), and plenty of games working off the duck theme - duck pond, duck maize, duck tattoos, and a duck coloring contest, all adding up to lots of fun for the whole family. There will also be a 3-dimensional duck shaped birthday cake and duck cupcakes for everyone to enjoy, lovingly baked by Caroline's favorite nurse, Mindy Donovan. Additional royal blue Super C shirts will also be available for purchase.
If you are unable to attend, but would like to make a contribution you can do so by mail to: the Caroline Vetter Benefit Fund at Gate City Bank, 1119 9th Street East, West Fargo, ND 58078; or Caroline Vetter at 708 8th Ave. W., West Fargo, ND 58078. You can also donate by stopping into any Gate City Bank location.