We have started this campaign to help raise money for Dylan's Super Squad team that is participating in the Kidney Walk Chicago. Here is our story why we are walking:
As the parents of Dylan we became part of the kidney community when our son was born last July with Chronic Kidney Disease and Grade 5 Vesicoureteral reflux (VUR). We knew he was going to be born with issues, however, his kidneys were not thought to be as bad as they turned out to be. We knew he had hydronephrosis of the kidneys while in utero, however, the doctors did not think any action was necessary as he was closely monitored with bi-weekly ultrasounds. Once he was born, we were given the news of how severely malformed his kidneys were. We were told he would need a kidney transplant with possible dialysis very early in his life. His kidneys did not develop correctly while in utero and there is no clear-cut answer as to why. Dylan spent the first 25 days of his life in the NICU. Unfortunately, his kidneys are not his only health issues, Dylan also has bladder dysfunction which could possibly be related to his kidney issues, but doctors are still trying to find answers on this.
Since being discharged home, Dylan has remained stable. He has had a few set backs with urinary infections that we try to catch and treat as quickly as possible, but as with anyone infections can turn serious quickly. He continues with follow up doctor visits to his pediatrician, nephrologists and urologist along with routine lab work and follow up studies such as ultra sounds, urodynamics and a MRI. He continues to stay stable, his routine blood work show his kidney function remaining stable. He is on a couple of prescriptions that help maintain his levels and his doctors are more than happy with his progress so far.
As Dylan’s parents it has been a roller coaster of emotions. Dylan has a smile that is infectious to anyone who sees it and keeps us going. His happy spirit helps us take everything a day at a time. He is a fighter and has super strengths. Dylan’s whole family has supported him and us since the beginning of this journey. Dylan has already shown such determination to overcome any obstacle thrown his way.
Unfortunately, things could change at any time. We know other families have gotten similar diagnosis and are not as fortunate as we have been so far. We are now connected with this community because of chronic kidney disease and this is why the walk means so much to us. Any donation that can help with research regarding this disease to hopefully one day have a cure or eliminate it all together would mean so much. Thank you in advance for supporting our son and so many others affected by this disease.