Support Kayden’s Fight in Lymphatic Failure

My name is Melissa Archer and I have been raising my grandson, Kayden Blake Ward, for 3 years as a single parent/grandparent.

Kayden has a serious incurable condition of the lymphatic system. He only has 3 working lymph nodes, and his lymphatic system is in total failure. What started as a manageable condition at birth has become a life-threatening condition with multiple hospitalizations in OU Children’s Hospital with collapsed lungs due to the lymphatic fluid now flooding his upper cavity, collapsing lungs, and building fluids around the heart (Lymphatic Failure and Central Anomalies Disorder) and a new diagnosis of the eyes in September (Pigmentary Retinopathy), which eventually causes blindness with no cure. Kayden was born without a Thoracic Duct (discovered May 2024) when the remaining working parts of his lymphatic system collapsed. A transplant has never been possible for a thoracic duct. He has experienced extreme fatigue, panting as he walks, so a custom wheelchair is on order as of today.

Kayden has been through intervals of procedures at Texas Children’s Hospital in Houston and in ICU during the summer after another failed surgery. We have made multiple trips to Houston flying commercial, which we can no longer afford. We are now using private and Angel flight. Kayden wears compression garments on both arms, hands, legs, feet, and trunk both sets Day and Night. Each piece of day garments is $850 to $1500 out of pocket for each separate garment every 4 months, and night garments are $3000 to $5000 twice per year. This year our out-of-pocket expense was over $26,000.

I do not receive child support, state assistance, or any other resources.

Texas Children’s Hospital has been working on a research plan to save Kayden since June 2024 with a 1-year timeline. Kayden’s decline began in early 2024 and has steadily become worse. He is on experimental meds of Sirolimus and Chemo to try and reduce the fluid, and so far, it is not working. At this point, there is still no resolution. We received a call Monday, Dec 2, to fly to Houston for 2 full weeks of intensive therapy on Kayden’s body as an opportunity to prolong his life and give more quality of life to allow time for the doctors to continue their research.

Kayden is malnourished and cannot eat, and he sleeps most of the day. Both parents live in two separate states, and due to unforeseen circumstances, his mother has not returned to reunify with Kayden. I resigned from a job with a prolific income because I’m the only one to care for Kayden day and night, and I’m working remotely to do this with a significant decrease in income.

We need help with expenses for the 2-week stay in Houston and all the out-of-pocket medical we will incur in January when his deductible starts over for this intensive medical therapy he desperately needs. We will also incur expenses for upgrading his $10,000 daily Tactile machine he uses for his lymphatic system in the year 2025 and updating day compression garments every 4 months and twice a year night compression.

I humbly request assistance for our upcoming trip to Texas Children’s Hospital in Houston and the medical treatments he will need this year. Please help.