Meet the Pearson family! Jake and Kailee found out in June of 2021 that their daughter Mailee would be born with gastroschisis, a condition where the small intestines are on the outside of the body. They were told it appeared to be a simple case and Mailee would spend six weeks in the NICU. At 34 weeks, they went for a scan and the surgeon said they needed to deliver immediately. Mailee’s stomach had begun to close, which caused the intestines to cut off from the other intestines. Mailee spent 6 months in the NICU. She had 3 surgeries during that time and a couple weeks ago had an intense operation where they had to taper and staple 60 centimeters of bowel and connect it to an ostomy, and then connect the other lower intestines to a J tube. Because Mailee’s intestines don’t work, she gets all of her nutrients through TPN, which is a central line. Two times a day when they open the line for feeding, they risk the chance of getting an infection in the blood. This infection would be very dangerous to Mailee.
In the midst of dealing with all of this, Cooper, their almost 2-year-old son, stopped eating. He wasn’t gaining weight and lost close to all his body fat. Jake and Kailee had him in and out of doctors and hospitals with no answers. In June 2022, his eye started having random movements. They went in for an MRI and found a large brain tumor. It’s located on the hypothalamus, optic nerve, and pituitary glands going back towards his brain stem. It has also metastasized down his spine. Cooper started oral chemo in July in hopes that the tumors would stop growing. In September they went for an updated MRI to find that the tumor has grown almost a full centimeter bigger and the spine has a new small tumor. Due to the location of the tumor, it is inoperable. Cooper has been on two different types of chemo for treatment.
Jake and Kailee said it has been a journey, and it’s far from over. On November 16th, the Walli Gives Back Foundation showed our love and support for the Pearsons and had a fundraiser for the family.