Ellis: To a New Kidney and Beyond!

Our little warrior Ellis is going to get a kidney transplant on May 16th! It’s a miracle he’s made it this far! While it’s hard for us to ask, we desperately need major financial support to make it through this phase. This transplant will improve Ellis’s quality of life and open doors to medical treatments that are necessary for him to thrive.

As many of you know, Ellis was born with End Stage Renal Disease in August of 2022, and given almost no chance of survival. He beat the odds. As Ellis continued to grow we compared his symptoms with those of other Renal Disease babies and realized something more was going on. So we pressed for more testing. It turned out he has a rare neurodevelopmental genetic disorder called CLCN4, one of 65 cases in the entire world! Ellis has huge challenges. Our home has become a medical facility, and we are all becoming de facto nurses.

Ellis is on dialysis almost continually, literally dependent upon his dialysis catheter as a lifeline. Every day he’s at risk of serious infection and damage to this lifeline. Because of his Renal Disease he does not produce urine. He has no idea how to pee and has not learned to eat. The kidney transplant will allow him to learn both of those, which most babies learn in their first week of life. Ellis will still need other therapies to help with the effects of CLCN4, which include a degree of blindness and low muscle tone (which prevents him from sitting, crawling, standing and walking, as other 21-month-olds can do).

Ellis is making progress. He’s learned to roll over, in spite of all the tubes, and his vision is improving. But this requires intensive therapy, both at home and in professional settings, and takes a huge amount of our time. After the transplant, Ellis will have fewer tubes. Eliminating the dialysis catheter makes possible therapies such as hippotherapy (horseback riding), aqua therapy (movement in water) and Dynamic Movement Intervention, none of which is covered by insurance.

Our current dream is that Ellis will one day run around the playground, but we know that will take years of intensive therapy, home equipment, and lots of time and love. We know we have your love. We will continue to put our time and effort into Ellis’s care and therapies. This has already meant a major loss of income for us, and we have used up most of our savings. We also have increased expenses and costs not covered by insurance.

This is why we need your financial support, both now for the transplant phase, and even beyond that. While insurance will cover the transplant itself, there are other expenses, including transportation, parking, co-pays, food, lodging, gas, etc. We will also need to pay for future therapies and home equipment not covered by insurance. All funds collected in this fundraiser will go directly to out-of-pocket costs for transplant and therapies needed for Ellis.

We are forever grateful to everyone who has walked alongside us in this time of our lives. We are grateful for any donations no matter the size. Please share this fundraiser, whether or not you can contribute financially. Anyone who wants to send us a check or provide us support through another means, please contact us directly. We know deep in our hearts that we can’t do this without you all. Thank you, all of our love.

Nicole & Jason