Jacob's Journey - #GoBeyondGiving

I would like to introduce you to a young man named Jacob Schilling. He is a very special person with some very specific needs. At age 4, Jacob was diagnosed with Common Variable Immunodeficiency (CVID), a primary immune disorder, and has subcutaneous  infusion therapy weekly to give him a temporary immune system. Jacob cannot produce the fighter cells necessary to keep him healthy and fight any illness or bacteria that enters his body. Even a cold can be troublesome for him as it can go into pneumonia which can do damage to his lungs and they can never be repaired. He lives with a continuous sinus infection. The doctors have said it will never clear up. He has had several sinus surgeries to clear out blockage, scarring and infection. Because of the immune disorder he is susceptible to other illnesses and health issues. In 2012, he was diagnosed with Crohn's disease. In March 2014, he had a keratocystic odontogenic tumor in his jaw. It is a rare, highly aggressive tumor which can be benign or cancerous. Genetic testing was done at UCLA for Nevoid Basal Cell Carcinoma Syndrome and was found to be negative, thankfully. It is still a mystery how he developed such a tumor. He will need a CT of his jaw every year indefinitely as it will return. The doctors have said this type of tumor can show up anywhere in his body and he will need to be monitored closely. If more develop, more testing will be warranted.

Along with the weekly IVIG therapy, he takes many medications daily, including 6MP (chemotherapy) and Pamidronate infusions (every 3 months at Children's Hospital) for bone loss (Osteoporosis). Jacob will require frequent testing, blood work and will require many trips to Omaha to follow up with his doctors. He currently sees Dr. Rodney Lusk, and Dr. Jon Vanderhoof both of Boys Town National Research Hospital, Omaha; Dr. Richard Lutz, Metabolic Bone Clinic at Children's Hospital; Dr. Emilina Lim, Rheumatology Dept. and Dr. Rhonda Wright, Neurologist, both, at Children's Hospital, Omaha and Dr. Roger Kobayashi, an Immunologist and Professor at UCLA, from Omaha as well. Besides his Pediatrician, he also has an Oral Surgeon, a second Immunologist and Pediatric Eye Surgeon. His eyes need routine checkups as the Crohns disease can do damage and the doctor is also watching for changes as he is showing signs of the development of Rheumatoid Arthritis. Needless to say, he has a lot of appointments.  

Having the immune disorder is a lifelong illness and serious challenge alone. Jacob's doctors have said his Crohns will be difficult to treat due to the immune disease. Jacob is also being treated for lymphangectasia, arthritis, osteoporosis, scoliosis and a recent diagnosis of asthma. Two inhalers have now been added to his long list of medications.

Jacob spent most of his summer with several hospital visits/many tests and six weeks of physical therapy, 3x a week, for bilateral hip joint pain and to strengthen weakening leg muscles. 

Jacob is fortunate to have a big brother, Ryan, that he enjoys spending time with. Ryan is very supportive of him when it comes to his illnesses but they are typical brothers and have their share of fighting. They wouldn't be normal if they were good all the time.

Jacob loves pizza and pasta. His hobbies and interests are watching football, but is unable to play due to bad bones. He loves watching basketball and shooting hoops, swimming, computers (or anything electronic).

Please pray for strength and comfort for Jacob, Ryan and their mom, as they take this long journey together.  Attitude, personality and the loving support of family and friends matters greatly.

Any donation you can make to help Jacob with the expense of his care will be greatly appreciated. Thanking you in advance for your generosity.