On March 10, 2015, Addalyn Froehner was born with Trisomy 18. Even with this diagnosis, Addalyn was a happy little girl who was loved greatly by her mother and father, teacher Erin Froehner and her husband Jay Froehner.
“Knowing our daughter had Trisomy 18 was like trying to shove as many memories into as little time as possible,” said 4th and 8th grade math and science teacher.
The Froehners had no idea what Trisomy 18 was when they took Addalyn home, besides that, the doctor said she would live for maybe a month. Addalyn had a total of five surgeries in her short life of 26 months, and many more hospital stays for illnesses.
“She reminded me every single day how fragile and precious life is, and how much we have to rely on God to make it through.”
Addalyn’s diagnosis affected many aspect of her parents’ lives. Mrs. Froehner quit working full-time so that Addalyn could get all the therapy she needed. According to her mother, she had six visits per week for speech, physical therapy, and occupational therapy along with a cardiologist, pulmonologist, neurologist, craniofacial surgeon, ENT, geneticist, allergist, GI doctor, and nutritionist who she saw on a regular basis.
Addalyn Froehner was 26 months and 11 days old when she passed away on May 21, 2017.
“Being the parent of a child with special needs is hard, but being the parent of a child with special needs, who has died, is even harder,” said Froehner. “I would gladly do it all over again and take all the sleepless nights and fighting to receive care for her. We continue to rely on God and His plan in all of this, despite it not being what we wanted.”
Mrs. Froehner created a 5k Run Saturday, March 10, at River Legacy Park in Arlington, for what would have been Addalyn’s third birthday to celebrate her short life and the lives she will continue to touch the hearts of. The race also helps to raise awareness for Trisomy 18, which most people haven’t heard of. To register for the race, go to https://secure.getmeregistered.com/get_information.php?event_id=127915
“I want others to know there is hope with a Trisomy diagnosis, and that it is not a death sentence,” said Erin Froehner.
Unfortunately, there is not much funding for Trisomy 18. Erin has a non-profit “Hope for Trisomy” that raises awareness, funding for research, and to educate others on Trisomy 13 and 18.
She does fundraisers to raise awareness and fund care packages that she will be sending out to families who receive a child with trisomy in the months to follow. Go visit her website and public Facebook page for more information and to donate to the cause at www.hopefortrisomy.org.
There are private Facebook support groups out there for those who have a child with any type of Trisomy diagnosis. “Rare Trisomy Parents” and “Trisomy Families” are two that Mrs. Froehner suggests. They both are made by families who give each other advice, hospital or doctor recommendations, along with sharing milestones, achievements, illnesses, and deaths.
Tracking Rare Incidence Syndromes (TRIS) Project is actively involved in research and providing articles with more updated statistics and information on Trisomy 13 and 18. Visit their website and public Facebook page for more information about them. tris.siu.edu.
Support Organization for Trisomy (SOFT) provides family support, doctors around the country who will help Trisomy children, and what Erin calls “Trisomy friendly hospitals,” as well as an abundance of resources for parents to know what questions to ask and what specialists their child needs to see, based on common issues associated with a Trisomy. Visit their website and Facebook page for more information; Trisomy.org.
According to Mrs. Froehner, Addalyn was doing great and was “heathier than she had ever been right before she died.”
Her cardiologist and pulmonologist cleared her and expected a quick recovery. Two days after she went in for a cleft palate repair, she developed pulmonary hypertension crisis. Her heart became unbalanced and went into failure. She was given CPR multiple times and the doctors attempted to get a bypass machine hooked up to her, but she had already experienced hours of limited oxygen to her brain and internal bleeding that was irreversible. Her parents made the decision to not continue with the bypass. Erin, instead, held her as she took her last breath on earth so to enter Heaven.
Erin Froehner says, “It was the best 2 years of my life, and I can’t wait until I get to see her again in Heaven.”