This is Elijah. He was born with Aarskog-Scott syndrome (https://rarediseases.org/rare-diseases/aarskog-syndrome/ ). Doctors said he wouldn’t make it past day 1 but when he did, they said he would never see age 3. When he turned 7, he wasn’t supposed to make it to 11. He is now 23 years old and beating the odds every day. Elijah is a happy go lucky man who consistently has a smile on his face. You hardly ever see him sad or angry. He loves high fives and hugs! He’ll even blow a pretty lady kisses with a blush on his face.
Two years ago, Elijah began experiencing diarrhea; after a week, without let up, his mother took him to the doctor where he was tested for everything from parasites to celiac disease. He endured colonoscopies and endoscopes which revealed internal bleeding due to reflux and lymphocytic colitis. To this day, Elijah, still has diarrhea and 3 weeks ago he began experiencing chest pain. A CT scan and x-ray showed that his lungs were clear and couldn’t explain the pain. Then, the vomiting began. Elijah has lost 20lbs and counting. He now weighs a mere 73lbs!
On May 1, 2019, Elijah, was admitted to St. Mary’s Hospital at the Mayo Clinic in Rochester, Minnesota. They have determined that his pancreas is shrinking which will require a lifetime of medication to regulate. He is also being treated for a vitamin A deficiency. Unfortunately, as of today, doctors still have not found a reason for his vomiting.
Elijah was discharged from St. Mary’s on May 4th, but he and his mother must remain in Rochester until further testing is performed, a diagnosis is found, and a treatment plan is achieved. Today, he has a low-grade fever and blood in his stool.
St. Mary’s Hospital does not take Elijah’s Texas Medicaid and therefore his medical bills continue to grow and cannot be paid. Elijah’s mother, Norma, is in the process of filing FMLA so she is not released from her position as a patient representative for a hospital here in Austin.
Elijah has two wonderful siblings Michaela who attends Austin Community College and is working towards a nursing degree and Christian who will be graduating Bowie High School this May. Norma picks up as many shifts as possible and works endlessly trying to supplement her income with cookie sales and other special projects like bath salts, essential oil sprays and, recently, Easter Egg baskets. Norma is quickly and steadily depleting her savings. With the cost of prescription medications, travel, and feeding her family she finds herself scraping by and even worried about purchasing something as small as Tylenol to treat Elijah’s fever.
Norma is that one person you can always go to when in need. Whether it’s planning a work event, helping with birthday and holiday parties, organizing baby showers or rounding up donations for those in need. Now, her and her family are the ones in need. I am asking our community and beyond to help this single mother provide for her family and the special needs required by her son. While there are many that need and deserve our help, I’m certain, there are very few who will be as grateful and who will cherish every cent donated, reciprocate every prayer and do, by any means necessary, as much as she possibly can to pay it forward.
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