Alysha and Ben Kellner consider themselves lucky – very, very lucky.

Today, they are the proud parents of a healthy, happy 11-month-old daughter named Kora, derived from Corazon, the Spanish word for heart. While that may not seem unusual, it was a journey that defied all odds. During Alysha’s 23rd week of pregnancy, their unborn daughter was diagnosed with a rare tumor growing on her heart. Fewer than one in a million babies develop this type of tumor – called a fetal pericardial teratoma – which often results in death.

Luckily, the Kellners were referred to the Midwest Fetal Care Center, a collaboration of Children’s Minnesota and Allina Health. There they met Dr. Joseph Lillegard, who told them about the possibility of performing in-utero surgery to remove the tumor. Fetal surgery to remove this type of tumor had only previously been performed successfully three times in the world.

On July 31, 2017, a team of maternal fetal specialists made small incisions into Alysha’s abdomen and uterus to expose the baby’s chest and found the tumor, which was four times larger than the heart. They were able to remove 90 percent of the tumor before closing up the incisions. On September 29, 2017, baby Kora was born at 35 weeks. She spent 42 days in the hospital and had another surgery to remove the remainder of the tumor. Today, Kora is cancer-free and enjoying all the wonders of her parents’ home.

Alysha is excited to share her family’s story and to provide hope to other parents. “It’s devastating to receive the news that there is a complication with your pregnancy,” said Alysha. “I want to let people know that there are amazing medical teams performing miracles every day. Just look at Kora!”

When hundreds of people gather at Lake Phalen for The Great Candy Run, presented by Midwest Fetal Care Center, the Kothe family of six will be among them. This is the first year that the family-friendly event takes place in Minnesota and the Kothes, who recently relocated to Minneapolis from Denver, are looking forward to participating once again in the Fetal Health Foundation (FHF) fundraiser that has special meaning for their family.

Lisa and Brian Kothe’s path to parenthood was far from smooth. In between there would be a miscarriage, multiple insemination procedures and, eventually, in-vitro fertilization. An ultrasound at six and a half weeks showed one sac with one baby and a second sac with identical triplets.

During an ultrasound at 19-1/2 weeks, the three sac-sharing babies started showing signs of twin-to-twin transfusion syndrome (TTTS). A week later, Baby A, whom they named Angela, passed away. The Kothe triplets were born at 26 weeks on August 23, 2002. The triplets spent 62 days in the NICU and eventually came home the week before Christmas 2002.

The girls – who recently celebrated their 15th birthday – have been healthy. Before moving to Minneapolis, the Kothes lived in Denver, where they participated in that city’s annual The Great Candy Run.

“It is so hard to go through. I was lucky to have a strong partner,” Lisa said, adding “You have to stay true to your beliefs and stay tough. There is a plan out there.” The family will be running and volunteering at the Minneapolis The Great Candy Run. “We run in memory of Angela.”

Denver, Colo. (November 2, 2017) – Being the face of an organization is a big responsibility for anyone, but it’s one that 14-year-old twins Ashley and Aspen Somers have accepted gladly since they could talk. The twins’ parents, Lonnie and Michelle Somers, launched the national nonprofit Fetal Health Foundation (FHF) in 2006 to provide hope, resources and connections to parents who are diagnosed with a fetal syndrome.

In 2002, when the Somers were about halfway thru their pregnancy, they were told that their babies were affected by Twin-to-Twin Transfusion Syndrome (TTTS), a rare disease of the placenta. Fortunately, the Somers found Dr. Ruben Quintero in Tampa, Florida, who performed minimally invasive intrauterine surgery which saved the twin girls.

On June 17, 2003, at 35 weeks, Aspen and Ashley were born. Today, the twins are healthy and have achieved enormous success academically and in a variety of extracurricular activities.

“They are the inspiration for everything we do,” says Lonnie. “It’s just incredible when you look at everything they’ve accomplished to think that at one point they were given almost no hope for survival.”

Says Ashley, “Imagine how many people would be affected if you had never been born. It would change the whole world. I want every family to have hope.” Aspen echoes her sister, stating, “I plan to change the world; and other kids should get that chance, too.”

DENVER, Colo. (Nov. 2, 2017) – Elite runner Alyana (Lanie) Szuch is eagerly anticipating the 14th annual Great Candy Run Denver 5K in Washington Park. Last year, at the age of 12, Lanie finished second overall in the Run, Colorado’s largest timed 5K. The Great Candy Run is also special to Lanie because it supports the Fetal Health Foundation (FHF).

Lanie’s mom, Caroline Szuch, suffered a placenta abruption during her second trimester. Seemingly healthy at birth, Lanie has had to overcome numerous medical challenges on her way to becoming a champion athlete, including surgery as a newborn and again around age eight.

Lanie’s indomitable spirit helped her overcome these challenges and become a top athlete, dominating women’s running events at the Go Pro Mountain Games as a pre-teen. “She’s such an inspiration,” said FHF founder Lonnie Somers. “Her accomplishments show that children can overcome serious medical conditions and achieve great things.”

Caroline advises parents to “Be your own advocate. Don’t give up if you are told there aren’t options. Keep searching until you find organizations like the Fetal Health Foundation that can direct you to the best medical solutions.”

The Great Candy Run benefits the Fetal Health Foundation, which helps families like the Carlins. We’re honored to share the story of their miracle baby, Clara.

When Coon Rapids, Minnesota residents Nicole Carlin and her husband, Robert, were expecting their second child in 2015, they decided to have a nuchal translucency (NT) scan detecting any genetic problems. “I only did this scan to get a free ultrasound; we never thought it would pull anything up,” Carlin admits.

After playing phone tag with the doctor, the Carlins eventually learned that the second trimester results showed there was a 1-in-33 chance their baby had a neural tube defect. A planned Christmas-Eve ultrasound revealed their baby was a girl — and that she had spina bifida, an open pocket in her back that results when the bones of the spine don’t form properly around part of the baby’s spinal cord.

“One thing I can be really thankful for is that when the doctor shared this scary news with us, at the same time he reassured us that the situation wasn’t as bad as we might think,” Carlin acknowledged. “He told us there is surgery they can do before birth and that we were great candidates for it.”

The Carlins met with Dr. Joseph Lillegard, who was starting to perform fetal surgeries at Children’s Minnesota in Minneapolis. They became the first fetal surgery patient at the Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health. At 25 weeks pregnant, the expectant mother was ready to take the next step in trying to save her daughter’s life.

“About four weeks after the surgery, Clara unfolded one of her legs and I felt her kicking me,” Carlin recalls. “When Clara was born April 25, 2016, her Chiari malformation had almost returned to normal and her back was fully closed with only a small scab.”

A test in late January showed Clara has a healthy bladder and does not require catheterization, and she doesn’t need a shunt. “I really believe this was God’s plan for us,” Carlin says. “Fetal surgery was one of the hardest things I have ever done, but it was worth every second.”

Photo credits: Lynsey Jaden Photography.

For the Young family – five-year-old twins Conor and Liam and their parents Kate and Randy – taking part in Denver’s 12th Annual Great Candy Run, which benefits the Fetal Health Foundation (FHF), is very important. They know first-hand that FHF is a real life-saver.

In 2009, the happiness Kate and Randy experienced while awaiting the birth of their boys turned to fear when, 20 weeks into the pregnancy, they learned the babies had twin-to-twin transfusion syndrome (TTTS). The parents-to-be were told nothing could be done to save their sons. Luckily, their search led them to the Fetal Health Foundation.

“The Fetal Health Foundation was there in our darkest hour to give us hope that anything is possible,” said Kate. “Contacting them was a huge turning point for us. They gave us the help we needed to find the right doctors.”

The grateful mother, who used to run marathons and compete in triathlons, is committed to collecting funds to give help – and hope – to other families. She participated in her first Half Ironman at Lake Tahoe and raised $1,300 for FHF, and created a fundraising page, “Paying It Forward for Fetal Hope,” to spread the word about the national nonprofit and its work.

Behind every major cause are people and stories that validate its existence. For the Fetal Health Foundation and its main fundraising event, The Great Candy Run, that inspiration is in the form of twin girls, Ashley and Aspen Somers.

Just over 13 years ago, Lonnie and Michelle Somers learned of complications with their pregnancy. As it was their first, they were scared and left with few answers. The babies were diagnosed with Twin-to-Twin Transfusion Syndrome (TTTS), a rare intrauterine disease of the placenta that affects identical twins. The Somers found answers and treatment on their own and, after welcoming their twin babies into the world, founded the Fetal Health Foundation so that other families would have a reliable source for answers, support, and hope.

“To know that because of me, other kids are getting a second chance at life is just amazing and I am so thankful to be able to give them that opportunity,” said Aspen Somers. Twin sister Ashley added, “Being part of Fetal Health and The Great Candy Run makes me feel like I have a meaning to my life. I am meant to change the world.”

The twins have been participating in the run and volunteering on Race Day for several years, always behind the scenes supporting families looking for answers.

While so many families will flock to this year’s The Great Candy Run (formerly known as the Race for Fetal Hope), the event is sweet in more ways than the obvious. As a beneficiary event of the Fetal Health Foundation, families use the event to celebrate and honor those lost and those who survived the journey.

One such local family is Jennifer and Chris Rabe, who celebrate their survivor, Barrett. Though just a little over one year old, Barrett has had more surgeries than some adults will have in their lifetime. He is a survivor of Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect for which there is no known cause — one of the many syndromes that Fetal Health supports through information for families and funding for research.

“The event raises much-needed support money for families just like the Rabes, as the costs involved with getting to the facilities can be such a burden,” said Lonnie Somers, CEO & Founder of Fetal Health. “We are honored to have many of these families involved in helping us raise awareness and funds for fetal syndromes that sadly take the lives of 200 babies every day in the United States.”

Now in its 10th year, The Great Candy Run Denver takes place November 10, 2013 at Washington Park, drawing a crowd of more than 3,400 people. All proceeds benefit the Fetal Health Foundation.

A growing tradition at The Great Candy Run is its Gumdrop Kids Fun Run presented by In Motion Physical Therapy and the post-race expo and family festival. With games and refreshments, entertainment, a costume contest, and an on-site visit to Sweet Pete’s Candy Shoppe, participants and spectators will leave with lasting memories.

However, some families have memories of when they were not sure their children would ever be born. Those families — of angels and survivors of intrauterine fetal syndromes like TTTS, Lower Urinary Tract Obstruction (LUTO), and Hypoplastic Left Heart Syndrome (HLHS) — are why this event began in the first place. One family, better known as “Team Trey,” participates each year to celebrate the life of their son.

“The race means being able to celebrate Trey’s life, remember the time we had with him and honor our son’s memory along with the support of family and friends,” said Trey’s mom, Christina Turner. “It also gives us the opportunity to connect with other families and share our stories.”

The Gumdrop Kids Fun Run hosts around 100 local children ages 10 and under. Participation is free and each child receives a medal upon crossing the finish line.