Living a life with Prader-Willi Syndrome

Taylor Borgen, daughter of Craig and Rebecca Borgen, is 10 months old this week.

Borgen girl

Posted on 6/7/14

By Dee Entzi

She’s starting to crawl and is growing like every other healthy child her age should be; but unlike most children, it has been a fight for Taylor and her family to keep her healthy and happy. 8 days after the Borgens welcomed their little girl into the world on August 1 of last year, they were given the sad news that their daughter had been diagnosed with Prader-Willi syndrome. After her delivery, Taylor responded like most healthy new babies, but within 24 hours her responsiveness had changed; she was no longer crying, hadn’t opened her eyes, and had no interest in nursing. Altru, in Grand Forks, began running several tests on Taylor but were unable to come up with an answer for her condition. By day 3, they had exhausted all their efforts and made the decision to transfer little Taylor to Rochester, Minn. for further tests and treatment, where she was later diagnosed.

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex, it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Relevant estimates have ranged from one in every 8,000 children to one in every 25,000 with the most likely figure being one in 15,000. PWS typically causes low muscle tone, short stature if not treated with growth hormones, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. There is currently no cure for this disease, but the Borgens, along with every other family affected by PWS, are hopeful that someday it will come to an end.

“When we found out Taylor’s diagnosis, we were obviously sad. No one wants to be told that their kid won’t be ‘normal’, this word now has no meaning to me,” states Rebecca Borgen. She continued, “We went through a grieving process; losing a child we thought we were going to have, but now we are so grateful for the beautiful little fighter we were given. We do believe that God gave her to us for a special reason.”

Since being diagnosed, Taylor’s family has fought hard to make her life as easy and happy as possible. She is currently on several medications and visits many doctors regularly to keep her on track, but is doing well. Though the family is thrilled with her growth thus far, they know that as she grows she will most likely face challenges from possible cognitive or developmental delays but the family remains optimistic and is dedicated to this fight.

“Because Taylor is doing so well, it’s easy to forget about the struggles she will have in her life,” states Rebecca Borgen, “I think my husband and I have handled everything well and just deal with everything as it comes. Our families have done well, too.”

May was PWS awareness month and the family continued to spread awareness and educate people on the disease that has changed their life. They will continue their fundraising and awareness efforts in July with a 5k walk/run in honor of Taylor. The event will take place on July 19 at the Legion baseball field. Registration will begin at 8:30 a.m., the kiddie race will start at 9:30 a.m., and the 5k is at 10:00 a.m. There will also be several activities for kids at the event. Registration fee will be a free will donation with all proceeds going towards Prader-Willi syndrome research. For more information on the event or to pre-register, contact Rebecca Borgen at 701-382-9726 or Jacy Borgen at 701-370-1333.