Support Sawyer Hannasch’s Journey to Mayo Clinic

Hi! My name is Sydney and my son Sawyer needs your help!

Sawyer and his twin sister were born premature at 34 weeks. Sawyer weighed 4 lbs 6 oz at birth and dropped below 4 lbs very quickly. After 24 hours of life, Sawyer was able to start bottling but struggled. At first, doctors thought that the issues with bottling were due to being premature. But after 3 weeks of life, Sawyer continued to have difficulty feeding, so doctors ordered a swallow study. It showed he was aspirating. They put him on the safest bottle flow and continued to give him time to learn to drink. After 30 days in the NICU, Sawyer was discharged and finally home with his brother and sister!

Around 4 months of age, Sawyer started to have chronic diarrhea (5-10+ bowel movements a day). He was referred to Peds GI and had several labs and tests run. Unfortunately, they weren’t able to find out what was going on. He struggles to gain weight and maintain a proper growth curve. At 16 months old, Sawyer currently weighs 18 lbs. He has only gained less than a pound in the past 6 months.

At 8 months of age, Sawyer started solids, but we noticed he couldn’t move food in his mouth. He had a level 4 lip/tongue tie and had surgery to correct this. While the surgery helped, it didn’t solve the oral motor dysfunction. He started speech therapy, and over the last 8 months, they have taught him how to use his oral motor skills and learn to eat. Right after Sawyer’s first birthday, his SLP noticed he was coughing with food and water. She encouraged us to have another swallow study to see if something was going on. Little did we know it was going to open a very large can of worms…

Sawyer’s swallow study showed that he was still aspirating. But instead of getting better, it became worse. They took him off all liquids by mouth and placed an NG tube. They then started him on a special high-calorie hypoallergenic formula. If the aspirating was due to being premature, it would have resolved or gotten better—not worse.

Shortly after he started having tube feedings, he started throwing up. After 4 days of throwing up, doctors decided to have him admitted to the children’s hospital. What was supposed to be a “quick ER trip” turned into a 19-day hospital stay nightmare.

While inpatient, Sawyer was seen by 4 GI doctors, 5 pediatricians, 2 ENT specialists, several residents, and med students. He went downhill fast and lost 3 lbs. For a boy who struggles to gain weight, this was a huge challenge. They immediately placed him NPO and on IV fluids. They thought maybe he was having a hard time with the formula and switched it. It didn’t help. They advanced the tube from an NG to an NJ. Bowel rest for 24 hours and then gradually increased feeds over 5 days. Still nothing. They ran labs, did scopes, performed procedures—no answers. Finally, he started a medication to treat bowel dysmotility. His stomach started to empty for the first time in 3 weeks. After 48 hours of no emesis, Sawyer was free to go home. Unfortunately, they don’t know what caused him to get sick, and the medication to treat the dysmotility can only be used short term.

At Sawyer’s hospital follow-up, his entire care team unanimously agreed that he needed to be sent to Mayo Clinic as no one knows what is going on. A referral was sent, and days later we received the news that he got in!

While we are overjoyed that Sawyer got into a very prestigious hospital, we are out of network for health insurance. Because of this, we need to place a $5000 retainer prior to his first appointment and are considered a “cash pay patient.” We are in the process of having health insurance approve the appointments as in-network claims, but there is no guarantee. Even if we are approved to be in-network for claims, the insurance policy is out of the hospital’s approved insurance providers, and we still have to pay the retainer per the hospital’s policy. His appointment is a month out, and we do not have the means to pull the retainer together in that short amount of time. We are humbly asking for help raising the funds for the retainer. Any extra money raised will be placed into an account and will be used to pay any medical expenses incurred.

Thank you from the bottom of our hearts.

Sydney, Kelvin, and Sawyer