Little Jesse Glaus
- By: Annelda Hamer
- Short URL: https://www.backabuddy.co.za/jesse-glaus-5726492850123115832
- Date Created: 9 October 2023
R 1 250
R 200 000
Letter from Jesse's Mom:
Our son, Jesse, came into this world three days after the lockdown began on March 30, 2020. The journey to his birth was a long and challenging one, marked by fertility treatments and the heartache of four previous miscarriages attributed to chromosomal defects. Jesse was born with a branchial sinus, which is a tube from his neck to his tonsils, harboring and posing a constant risk of infection. Despite these challenges, Jesse remained a joyful baby who delighted in simple pleasures like yogurt and playing in his jumperoo.
At eight months old, our family faced another hurdle when we all contracted the Delta variant of COVID-19. Jesse, still receiving breast milk, bravely battled the virus alongside us. However, his health began to deteriorate further as his vomiting escalated, moving from reflux to persistent vomiting. Our journey through the medical system intensified as we sought answers and relief for Jesse's suffering.
After numerous hospital visits and tests, a gastroenterologist discovered that Jesse had severely low immunoglobulin levels. This finding prompted us to consult an immunologist, who initiated Jesse's treatment with polygam infusions. These infusions were a harrowing experience, requiring close monitoring due to potential allergic reactions and other complications.
Further examinations revealed high eosinophil levels and the possibility of allergies, leading to dietary changes and specialized foods for Jesse. Despite the polygam treatment, his condition did not significantly improve. We reached a critical point when Jesse's health took a dire turn, and we had no choice but to seek help from an immunologist.
Fortunately, we were able to secure an emergency appointment with a compassionate specialist who diagnosed Jesse with cellulitis and the early stages of sepsis due to a hole in his palate. This critical situation led to a month-long hospital stay filled with immense challenges and emotional turmoil. The doctors determined that Jesse required monthly polygam infusions to manage his condition.
Eventually, genetic testing confirmed that Jesse had a primary immunodeficiency disorder known as Common Variable Immunodeficiency Disorder (CVID). To our surprise, genetic testing also revealed that I, too, shared the same disorder.
Our battle with the medical aid provider continued, and it was suggested that our son receive in-hospital palliative care instead of life-saving treatments. Thankfully, after much advocacy, we obtained approval for polygam treatment, with ongoing reviews and monthly tests in the hospital. This treatment remained a traumatic experience for Jesse, involving multiple painful needle insertions.
As Jesse reached the age of two, we sought treatment for his branchial sinus, which had caused hearing problems and speech delays.
Unfortunately, complications during the procedure led to further hospitalizations and intense pain for Jesse. His medical journey included multiple admissions, a complete halt to eating at eight months, and a reliance on expensive formula and medications.
The discovery of a black-box warning associated with Nexium prompted us to explore alternative treatments, such as aloe juice, despite limited options. Surprisingly, Jesse's condition began to improve, and he slowly transitioned off Nexium, ending the cycle of vomiting. On Christmas Day 2022, Jesse defied all odds and began eating solid food, marking a significant turning point in his recovery.
However, the challenges did not cease there. A blood clot and spinal hematoma followed in quick succession, posing grave risks to Jesse's health. By February 2023, Jesse had endured 28 polygam infusions, resulting in scarred veins and a heightened risk of stroke. We explored new treatment options, and our medical team recommended weekly slow infusions administered at home, offering Jesse the possibility of a more stable immune system.
The medical aid's refusal of essential care for Jesse and their suggestion of palliative care instead was a heart-wrenching and incomprehensible moment for our family. It was a stark reminder of the bureaucratic challenges within the healthcare system and the devastating impact such decisions can have on individuals facing life-threatening conditions. To hear that our 18-month-old son should be denied access to life-saving treatments, when there were viable alternatives, was a painful ordeal. Thankfully, after persistent advocacy and efforts, we were able to secure the necessary treatments for Jesse, ultimately giving him a chance at a healthier and more hopeful future.
- Oct 13, 2023 - R 500.00 Fees covered
- "A worthy appeal for a family who have faced all their challenges with such courage!" - Clive
- Oct 13, 2023 - R 500.00 Fees covered
- "Such a brave little fellow, with so many trials he has overcome! Special, loving parents too! So many sacrifices, but so much hope for the future!" - Margie
- Oct 11, 2023 - R 200.00 Fees covered
- "" - Anonymous
- Oct 09, 2023 - R 50.00 Fees covered
- "" - Anonymous
Little Jesse Glaus Campaign
Born during the lockdown, Jesse faced health challenges from birth, including a branchial sinus and later, severe issues like low immunoglobulin levels and CVID. Battling medical aid providers for essential care, Jesse's health slowly improved despite complications like a blood clot. Despite the hurdles, we secured crucial treatments, offering hope for Jesse's future.