Dustin's Story

Memories Captured by Stephanie Fieldberg Photography  

Meet Tiny Light Dustin. Dustin loves to cuddle, play outside, help his Daddy on the farm, ride his horse “Buddy,” and play with his two older brothers and younger sister. This Tiny Light’s journey will not be easy, but his family is determined to take it one day at a time and never give up hope.

Dustin was born May 5, 2006, and shortly after his difficult journey began. When Dustin was only two days old, his parents, Andrelei and Bert, brought him to Emergency due to bloating and vomiting. He was transferred to the Neonatal Intensive Care Unit, where he spent three weeks before being discharged with no explanation. At the age of six months, when Dustin was introduced to solid foods, he became very constipated and then at the age of one year he was hospitalized again and diagnosed with “failure to thrive.” At this time Dustin was given NG tube feeds for 10 months but his weight continued to drop and his health continued to deteriorate. Finally, on December 22, 2007 when Dustin was 19 months old his family was given a new diagnosis, Hirschsprung’s disease, and an emergency colostomy was placed. Hirschsprung’s disease is the lack of ganglion cells in the intestine, cells which allow the intestine to relax so stools can pass through.

His diagnosis came as a huge relief to his family; finally they would be able to do something to improve his health and quality of life. After his diagnosis the diseased portion of his bowel was removed, and a few months later his colostomy was closed. This was supposed to be the end of his problems, but shortly after things went downhill again for this little Tiny Light. Various procedures began including Botox injections and biopsies. A cecostomy tube was placed in fall of 2009 but this did not work well and Dustin had to have an ileostomy placed in May 2011. Over the six years of his life Dustin has made 13 trips to the operating room, endured over 20 hospital stays, and had countless tests, procedures, and doctors’ appointments. Dustin’s disease is not curable but it is treatable.

Dustin will face more surgeries in the future, but in the meantime he faces each day with courage. His family hopes people will see Dustin for the sweet boy that he is and that he’ll grow up to be happy with who he is and accepting the disease as part of himself. His amazing family worries about what the future holds for Dustin, and how he’ll be accepted by his classmates in school because of his ileostomy. All that is certain for now is this little Tiny Light is a fighter, and his family will be by his side for his journey.

Story written by Kelsey Walker.


Dillan's Story

Memories captured by Eye for it Photography

Tiny Light Dillan is a brave little four year old who has a fighting spirit.  He loves to race, dance, play with his cars and trains and laugh with his family.  He is quick to smile, even after feeling pain and he likes to be silly, even when he is at his sickest.  Dillan loves superheroes and is an ardent protector of his little sister Sophie.

Dillan was diagnosed with Hirschsprung’s disease at three weeks old, although the illness was evident from the day he was born.  This condition affects the large intestine - the nerve cells necessary to enable a normal bowel movement have not developed.  Over three surgeries, Dillan’s disabled colon was bypassed and he received an ileostomy which releases his waste and allows time for the nerve cells in his colon to develop.  Hopefully in the near future, he will have surgery to reconnect his intestines and ideally continue life as a normal little boy.

Now in preschool, Tiny Light Dillan struggles to understand why he has an ostomy but is otherwise doing well.  His parents await his next surgery and hope that will be his “last surgery ever”, though some children with the disease often suffer residual health problems.  His mother says, “My dreams are that he understands what has happened and helps spread awareness and knowledge, and that he keeps loving the way he does.”

Written by Angela Funk