Danica Stockwell spent the majority of the first two and a half years of her life in hospitals. Medical personnel have been available to her. Now she is getting a donated flight to Houston so she can stay in the battle for her life.
The 4-year-old Mandan girl has surfactant protein c deficiency-associated interstitial lung disease — a rare disease that requires her to be on oxygen 24 hours a day. The disease has progressed to the point where doctors are unable to do anything more for her, and she is waiting to be put on a list for a double-lung transplant.
In November, Danica had her initial evaluation to be placed on the transplant list at Texas Children's Hospital in Houston, according to her mom, Cassie Stockwell. Danica was unable to get on the list last year, so she must be re-evaluated each year until she can get on it.
Because of her weak immune system, it's a risk for Danica to fly commercial, and the cost for a one-way medical flight ranges from $13,000 to $21,000, Cassie Stockwell said.
With the help of the Denver-based organization, Aero Angel, Danica was able to make it to her second evaluation this week. The nonprofit was able to secure a private jet for Danica, which left Bismarck for Houston Sunday afternoon.
"This couldn't have come as a bigger blessing for us," Cassie Stockwell said.
Danica was diagnosed with the disease when she was 5 months old and started seeing a specialist at the Mayo Clinic. There are no treatments available for Danica's disease, just supportive therapy.
Her mother describes Danica as a smart girl who loves what other little girls love, such as Barbie dolls. She likes to dress up as Strawberry Shortcake.
"Looking at her, you wouldn't be able to tell that she has been through what she has been through, because her personality is so bubbly," said Cassie Stockwell, with her husband, Chad, has two other children, Carter, 10, and Kyra, 6.
Danica burns excessive calories because her body has to focus a lot of energy on breathing, so she only weighs 27 pounds and uses a feeding tube.
Last year, the Stockwells learned from doctors that nothing more could be done for Danica, and that she couldn't wean down oxygen or come off the feeding tube. Her doctors recommended the family visit with transplant centers, as a last resort.
They were given a list of centers that take care of pediatric patients her size and age. The decision to move forward with a transplant did not come easy, as Danica's parents saw that the statistics for a lung transplant in children are not very good.
"For us, it's kind of, well, we're exchanging one disease process for another, because with a lung transplant it's a whole different thing. You're on medicine for life, and because your lungs are exposed to everything, it's really hard to get a transplant and keep them from not getting sick and not having any issues," Cassie Stockwell said.
For Danica's first evaluation in Houston last year, they were able to get a flight through Sanford Health, which has medical planes, said Cassie Stockwell, who is also an employee at the hospital. The hospital's foundation has agreed to fly Danica there and back for the transplant operation. Unfortunately, the planes are not available for each yearly evaluation, so the Stockwells started researching organizations that offer donated flights.
Aero Angel finds planes and pilots who donate their time to fly people and families to and from their medical appointments, according to Mark Pestal, founder of the organization.
"Aero Angel's niche is for people and families who need medical care who can't travel on commercial airlines or who don't require an air ambulance flight," said Pestal, a Denver attorney and commercial pilot.
Aero Angel has helped coordinate about 80 flights since he founded the group in 2010. It has flown patients across the country, including Denver, New York City and the West Coast.
Pestal said Danica was a referal, and he reached out to her mother to learn more about Danica's situation. The he spoke with his contacts in Houston, and, within a couple weeks, he found a pilot who donated his private jet and staff for Danica and her family.
Cassie Stockwell said she is grateful for the flight. She said she originally took time off last week to drive Danica to Houston, but said that would be a huge undertaking for the two of them.
The Stockwells remain hopeful that the second evaluation will bring good news for Danica. Without a transplant, it's likely Danica's health will decline. Even if she is unable to get the transplant, Danica's parents would remain hopeful that she would improve and get better.
"We're big believers in God, and we have a lot of faith," Cassie Stockwell said.