I want to tell you about a wonderful one-year-old boy named Oakley.
“The baby’s kidneys are measuring too big.” Life was changed when Oakley’s parents went in for a routine prenatal ultrasound. They had to transfer care to the High Risk clinic. This consisted of weekly ultrasounds to try to see what exactly was wrong with the baby. One thing they knew for sure is that Oakley had a blockage somewhere in his urinary system, which caused several complications. A few of these were an enlarged abdomen, extremely enlarged kidneys, bladder, ureters, and he has also been given the diagnosis of Posterior Urethral Valves or PUV.
“We have to discuss some options.” There was talk that due to his enlarged stomach, his lungs may be too compressed to breathe when he was born. However, on 9/23/10, Oakley was born 3 weeks early and crying! Oakley’s parents chose life for their son even though it was suggested he may not make it to birth. They gave him a chance when nobody else would. Never give up, never give in! Oakley was transferred to the NICU immediately after birth and a urinary catheter, feeding tube, and monitors were placed. Around the clock blood work was done. On Oakley’s 3rd day of life, he underwent his first surgery. When they went in to perform the surgery, they realized they had misdiagnosed his condition. The original diagnosis of PUV was ruled out.
“He looks great on the outside, but is very sick on the inside.” Oakley has several diagnoses. He has a variant of Prune Belly Syndrome which is found in 1 in 40,000 births. Along with PBS, there are a multitude of other urinary and renal issues. For treatment, multiple blood draws and specialty visits to the Urologist and Nephrologist are required. You see, when dealing with a ‘kidney kid’, unfortunately the future is very uncertain. Oakley has been under anesthesia 3 times and under sedation 1 time in his first 15 months. He has had 3 surgeries, 2 MRI’s and uncountable renal and bladder ultrasounds. He has had to have invasive nuclear scans. (VCUG & MAG 3). There is also a special diet, prescription formula, and daily medications that are taken. There is one thing they are sure of - Oakley will need an inevitable kidney transplant in his life.
Oakley is not the only person that is living the lifestyle with a multitude of medical issues. His mom, dad, two sisters & two brothers have shared in all of Oakley’s experiences; yet, this young family endures with determination and courage. It is extremely difficult and emotionally draining for every member of the family. Hope prevails!
This family needs our help. They have been given a gift of life that requires prayers, diligence, and persistence. However, let alone in today’s economic hard times this family endures a financial burden that few of us will ever experience.
“For every negative in life, there is a positive.” Oakley’s mother believes that God has chosen them to be parents to this special boy for a reason. She has made it her will to raise awareness of Organ Donation. Not only for Oakley, but for the other people who are awaiting a lifesaving organ transplant.
If you could find it in your means to contribute ANYTHING to a benefit auction that will be held at Sts. Peter and Paul School gym on March 24, 2012, we would greatly appreciate it. We are in need of large-scale items for a raffle as well as auction items. Monetary donations may be made out to Sarah Savickas and mailed to: J’s Journey Attn: Sarah Savickas – 5796 Rollaway Dr. Comstock Park, MI 49321
Kim Poplaski (KimL141@aol.com) we are also able to pick donated items up. Please call or email.
Mary Ann and Nick Friar – J’s Journey – Families Helping Families Fundraising Events 616-785-3240