Dreams for Damien

This is probably not for the faint hearted.

Dreams for Damien is a Facebook page I came across last night and after not even five seconds of looking at it, I was reduced to tears. I have literally never been so moved by a “fan page” of any sort before. It just tugged at my heart strings and on a completely serious note, I felt the need to share it with my followers, readers and fans. It also looks to raise awareness for organ donation.

How could you not? (SOURCE: Dreams for Damien Facebook page)

How could you not? (SOURCE: Dreams for Damien Facebook page)

Taken from the Dreams for Damien Facebook page:
“Damien was diagnosed in utero with autosomal recessive polycystic kidney disease and we, as his parents, were told he would not likely survive birth because neither his kidneys showed function. We were told should we choose to continue the pregnancy (as if there even WAS a choice to be made here) that we needed to be realistic and plan for a funeral. I will never forget that day and the grief it brought, however we were determined to bring our angel into this world and leave the rest in God’s hands.

Damien arrived at 36 weeks via an induction and was whisked off to the NICU without my ever seeing him, holding him or kissing him to be seen by a variety of specialists. What seemed like an eternity later I was told he looked “great” but was being transferred to another hospital that is better equipped to handle special needs kids. He came home a month later with WORKING KIDNEYS, but in need of an NG tube in his nose as he would not eat by mouth. The dr said to expect his kidneys to gradually fail and be in need of dialysis by 8-10 years of age. Well, they failed at just 4 months due to what we now know to be a wrong initial diagnosis. We discovered through genetic testing that Damien actually suffers from a much worse and far rarer kidney disease known as Nephronopthisis 3. This led to kidney failure, liver failure, severe developmental delays, poor muscle tone, an inability to eat by mouth, bone deformities and heart trouble. At 5 years old he is not potty trained, has never stood up and does not crawl or walk.

Damien has endured dialysis for 5 years now and has had more surgeries than I can count. He underwent a combined kidney/liver transplant last year, however the kidney never “woke up” and so we are back on dialysis 3x/wk, in addition to being severely immunocompromised due to the anti-rejection meds for his new liver. Damien takes 12 medications a day and is seen by numerous specialists. He gets PT, OT and Speech. Because the last kidney failed, he is awaiting another kidney transplant. While our lives are not easy, Damien is a blessing in every way possible, He is larger than life and has taught us the true meaning of love, strength and courage. We thank God every day for allowing us to care for him.

Damien’s medical expenses are numerous. With co-pays, insurance premiums, travel expenses to and from the hospital, an upcoming transplant, and many missed days of work to care for him we have decided to set up a page to allow those who wish to help offset these costs.”

If you wish, donations to Damien can be made on this link here. If not, leave a message on the Dreams for Damien Facebook page, wishing him and the parents well. God knows that a young boy so brave and strong deserves the recognition.

– by Noah La’ulu

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