by Devonn Wilson
Dear Friends,
I was born with Alagille Syndrome, and by the time I was five years old I needed a liver transplant to survive. That transplant gave me the chance to grow up, to build a life, and eventually become a father, which is the greatest gift I have ever known.
Like all transplant recipients, I have taken lifelong medications to protect my transplanted liver, and over time those medications have slowly damaged my kidneys. In the past few years my kidney function has declined rapidly, and today I am living with about 10 percent function, spending eight to ten hours every day on dialysis just to stay alive. Dialysis keeps me here, but it is exhausting, and it is not a long-term solution.
Now I need a kidney transplant.
Alagille Syndrome did not stop with me. My three daughters, Luna, Layla, and Lola, also live with ALGS, and one of my girls has already endured a liver transplant herself. I have stood in hospital rooms as a patient fighting for my own life, and years later I stood in hospital rooms as a father watching my children fight for theirs. Hospital rooms are all too familiar to us, but so is hope, and we have learned to hold tightly to both.
This chapter feels different because I am not just fighting for myself anymore, I am fighting to stay here for the three little girls who still need their dad, who fill my heart with so much joy, and who deserve to grow up with me by their side. I want to be here for their milestones and their ordinary days, for the laughter around the dinner table and the quiet moments when they simply need to know I am steady and present.
A living kidney donor is my greatest hope. A kidney from a living donor often lasts longer and functions better, which matters deeply given my medical history, and it would give me the best chance at more healthy years with my family. I know donating a kidney is a serious and personal decision, and I would never ask lightly, but if you feel moved to see if you may be a match, please visit my profile page at the National Kidney Registry to start the kidney donor screening process by clicking the link below.
Devonn Wilson – Why I Need a Kidney | How You Can Help
If donation is not right for you, sharing my story may help the right person see it so please share and pass it on.
I survived once as a little boy who needed a liver to live. Today I am asking for the chance to keep surviving, to keep showing up, and to keep being the dad my daughters know and love.
With gratitude,
Devonn Wilson
