After an already miraculous and rocky pregnancy that included weekly injections for mom, Easton made his debut on February 25, 2012 about 5 1/2 weeks early via emergency C-section. To everyone's surprise he did not need a NICU stay (as his older sister did), weighed in at 4lbs 14oz at his lowest weight, and only appeared to be a little jaundiced.
By Easton’s third day home, it was obvious something was not right. He could not eat; he could not sleep; he constantly had bursts of pain, along with many other heartbreaking symptoms. At only 2 1/2 months old Easton was hospitalized for what would become the first of many times to follow. Health issues began to emerge that no one could have ever imagined...issue on top of issue that continues to keep doctors baffled.
* Gastroenterology: Easton was diagnosed with Lymphonodular hyperplasia, Disaccharide deficiencies in lactase, maltase, & sucrase enzymes, Granulomas found in an irritated bleeding area during EJ’s last surgery, Gastritis, Esophagitis, & Acid Reflux. Easton often feels a constant pain in his "belly" that makes him quite sick and leads to a heartbreaking cry until the pain subsides, sometimes not for hours at a time.
* Immunology & Infectious Disease: Unable to produce pneumococcal antibodies, Easton was administered the Pneumovax injection to help boost his antibody titers. Titers initially increased; however within 6 months, his titers were once again extremely low. His immune system is just unable to retain memory.
Easton was then diagnosed as immune deficient with specific antibody disorder. He began subcutaneous weekly 2 hour drips of gamma globulin. His first two drips were administered in a clinical office, but because this will continue for at least 70+ weeks, his family has been taught to administer his injection drips at home. Unfortunately because of Easton’s damaged kidney, Easton does not qualify for monthly IVIG drips. This means that every Friday evening, a needle is used to connect a small pump to him. Nothing saddens and infuriates a toddler more like shots and being told to sit still for a few hours.
Easton also has a T-cell lymphocyte deficiency that makes his immune system pretty susceptible to many viruses and illnesses. This sometimes causes his parents and sister to take medicine in order to stay "healthy" and lower the chance of infecting Easton with any common illnesses.
*Allergies: Easton has many allergies that can send him into immediate anaphylactic shock or cause fever, rashes, etc. He is also allergic to many of the common medicines administered to patients, therefor sometimes he has prescriptions specially formulated & delivered to him from Northern Louisiana. Many other things greatly bother him, but are not classified as allergies.
As for Easton's diet, everything he eats is dosage dependent. He is an extremely happy and active little boy, who unfortunately finds even the simplest task of eating to be a nuisance. For the first two years of his life his primary nutrition was a hypo-allergenic, specially ordered & delivered formula. He is now on an extremely sensitive diet, but not without pain. If Easton eats something once, he is unable to eat it again for a week because many foods and their ingredients cause great pain and therefor become dosage dependent for him.
*Nephrology & Urology issues: Easton's right kidney is significantly smaller than his left. Because of this, the left kidney may work a little extra to make up where his right kidney lacks. Easton is continuously monitored as a possible high blood pressure risk.
Urine output is often high, as well. EJ has an abnormal flow of urine, known as Vesicoureteral reflux. This can cause further damage to an already damaged right kidney.
*Otolaryngologist (ENT): Because of his weak immune system, Easton has constant ear aches that are also hard to treat because of his allergies. His right ear often develops MRSA for months at a time, which has to be treated with specially formulated medicine created around Easton's allergies. He also recently had his tonsils and adenoids removed due to severe sleep apnea.
Even as I sit here and tell you the adversities Easton has faced, I am both saddened and grateful. I am blessed he has wonderful doctors who treat him as a priority and continue to push through the questions until they find answers. However, I am saddened because in the meantime, EJ is unable to live a normal, healthy life. No one knows how to help him, what official diagnoses to give him, and what are the underlying causes to all or most of these things. It is now time to search high and low for the best doctors to put together the pieces to this mysterious puzzle. Although Easton is covered by his father's health insurance, there are many medical expenses his family incurs. This will only dramatically increase as the traveling begins and the search for answers and relief continue. Please join us in supporting this precious miracle.
Prayers are most important; Donations are greatly appreciated and can be made at any Capital One bank payable to: Easton John Clark Benefit Fund, via PayPal link, or Go Fund Me account .
Thanks for the love and support!
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