Our Story

Sophia Jayce Williams
02/06/2014 36 weeks gestation weighing in at 6lbs. 3oz (pretty big for a preemie!). Her kidney issues were known in-uterine, however her imperforated anus and no vaginal opening were not known until birth. 

Within 36 hours she was in surgery receiving a colostomy bag to ensure waste would exit her tiny body. During this surgery it was found that she was in stage 3 renal failure and had 1 kidney functioning at 50%.

The Hydronephrosis was diagnosed & it was found that she wasn’t able to urinate from below. As a premature baby she was having to be cathed every 2 hours. It wasn’t figured out that she has a neurogenic bladder at that point, this was later diagnosed. She would never free-pee from below. Doctors tried many times to give her ways to urinate on her own to no avail; The decision to go with vesicostomies seemed to be the only answer that works, but they would continuously close. She was so sick from not being able to urinate on her own. Urine was refluxing back and UTIs were so frequent. She had two reconstruction surgeries by the age of 2. 

They had to make her anus. This baby had to endure such painful dilations just to keep this functioning. She has a mase now and uses an enema type routine DAILY in order to remove the food waste from her body. 

At 2 years old she was admitted to the hospital in Augusta to have the nub of her left non-functioning kidney removed because of the amount of infections she was enduring. She spent two weeks in the hospital. All this while her one sick kidney is just chugging along.

However, it is becoming increasingly difficult for it to do all the work by itself.

At the age of 6 Sophia has had 20 surgeries, big invasive ones and small but very important ones to maintain her health. Her poor little stomach looks like a road map that tells the story of her journey thus far. 

In March at the age of just 8 years old, Sophia’s creatine level started slowly creeping up. Her nephrologist decided it was time to refer her for a transplant evaluation. Sophia has fought so hard to be a kid who can do whatever she wants like other kids. Despite being so different.

She isn’t shy of showing her friends her many scars and her special ways of doing things different than the “norm”. 

She takes 6 meds a day, some being 2-3 times a day. All of this through her g-tube which she received at 3 months old due to the acidity of some of the medications. 

Sophia is the strongest little fighter and through her short little life has brought so much JOY & LOVE to all who know her! She is amazing and so excited about going to the 3rd grade in the fall. Now she has a chance to receive a kidney that will help her live a healthier life, how amazing is that? She is also excited to get to try some of the foods that are on restriction as of now!

Thank you all so much for taking the time to read her story! We appreciate each and every one of y’all! 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

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