Natalya Kaehlers journey with SMA syndrome

Hi, we’re Jason and Amy Kaehler and we’re raising money to take our youngest daughter Natalya (Tally) to her Mayo appointment in June to access her SMA syndrome for her upcoming surgery. SMA only affects .03% of the population with a fatality rate of 1 in 3. So, what is it? Superior mesenteric artery (SMA) syndrome is a rare disease defined as the compression of the third portion of the duodenum between the abdominal aorta and the superior mesenteric artery. From which she’s constantly getting obstructions in her small bowel that eventually passes. The issue it creates is she could die of a bowel obstruction, a GI hemorrhage or gastric perforation.

A little about our family. We’re a happy family of four , well 8, including our furbabies. Jason is a train engineer and probably the nicest person you’ll ever meet, I’m (Amy) and am disabled with Multiple Sclerosis, which lets me get to spend a lot of time with my family. Mykaela is our 22 year oldest who is the most loving older sister and daughter we could ask for. Natalya is 12 and our miracle baby. We always joke she took 5 years to make. She came into this world fighting at 4lbs 1oz. She is loved by everyone she meets, there’s just a light of goodness she glows. She’s beautiful like her older sister and kind and friendly to anyone.

Natalya started getting sick with GI issues about 8 years old. At first we thought she just had the Nowicki ( my maiden name) curse and just had a weak tummy. The trouble just progressed and it was always passed off as IBS or Acid Reflux. The pain she was experiencing came to a head when she was 10 years old. She would eat anything and be in extreme pain. Initially, her primary doctor diagnosed her with MALS syndrome after imaging. The pain continued where she was admitted to the hospital in 2021. They took imaging and determined they didn’t believe it to be MALS, but it was SMA. Since she had normal blood flow in her arteries she would grow out of it. Her arteries would still be compressed , but some kid’s arteries correct themselves. All they saw was a thriving child. With this disease a lot of child don’t push through the pain and won’t eat.

For the last 2 years Tally has been in extreme pain almost every time she eats, but she’s a foodie so she pushes past the pain. Until she couldn’t anymore. We have almost become immune to how weak her immune system is and the pain. We’ve been to doctors numerous times concerned why she gets sick so often. She has a gastroenterologist who dismissed her pain. The suggestions were to change her diet . We have tried every diet we could find, we have done elimination and nothing has helped. Things have been rapidly progressing lately, where she couldn’t eat and only wanted to sleep. She comes home from school and sleeps 2-3 hrs and then goes to bed 2 hrs later. She has missed over 40 days of school in the last two years. Wahpeton School has been incredible with helping us.

We have to take her to MAYO in June and even if we save every penny we can’t afford to go. She needs to be seen 5 days minimum, possibly up to 2 weeks, to do all the testing to ensure they do the procedure needed as there are dangers with being so young. This appointment is to rule every other possible disease and see if there’s underlying issues. She’s been having a bunch of kidney and back pain. Jason and I are looking for help to offset with the expenses as a result of Jason taking 7 plus days off through FMLA , hotel stay , gas and food. We need to be prepared. We’re not asking for anyone to help us with medical bills, we will figure that out .We just need help to survive and pay our bills and be able to travel for her. With any money not spent will be saved for our trip back there for her surgery. We know we can get through this, because our family has gotten through every challenge thus far. God and the universe is on side. I have to believe that. If you can’t donate I completely understand but please share. Thank you from us all..

UPDATE: Tally has stop eating solids n liquids beyond water. She needs to get to MAYO asap. We’re hoping to take her to ER at MAYO within days.