August 2023 Special Needs Living Akron/Canton

The Journey & Legacy of Reston Price

In loving memory 11/14/2016-5/9/2023

By Andrea Hurr with photos submitted by Reston's Family

Defying the odds before he was even born, the doctors (looking at ultrasounds and prenatal test results) recommended to Rachel and Ryan Price to think about terminating their pregnancy. Refusing to even think like that, they were blessed with Reston on November 14, 2016 at 38 weeks. However, they received more bleak news when the doctors then said they didn’t believe he would live longer than 3 hours. Pretty much all the outcomes that were predicted by medical staff about Reston, would be proven wrong. He went on to outlive that initial prediction of 3 hours! They said he would require the use of a wheelchair, but he was able to walk and run around! They said he would have to be on oxygen forever because his numbers were regularly in the 80’s and not the 90’s like most people, but he was able to breathe without oxygen tubes! He was diagnosed with autism in 2019 and was non-verbal, but was able to communicate in his own way and regularly “get his way” with teachers and nurses, pretty much everyone! He just had a magical way about him. He was a true fighter but sadly his fight ended suddenly on May 9, 2023.

Rachel and Ryan knew they would be having some challenges with their son as prenatal testing told them that Reston had pulmonary stenosis, a club foot, and extra fluid from the back of his head to his face. He was intensely monitored after delivery and had doctor’s appointments every day for the first 3 years of his life. Reston had 2 open heart surgeries for pulmonary stenosis and went on to have 28 more procedures throughout his life for different ailments. He was able to live with a pretty substantial degree of scoliosis, 113 degrees actually which made his spine look like an S. In 2017, he was diagnosed with Noonan Syndrome (PTN11), which is a very rare genetic disorder. Cardiac abnormalities can be found in over 80% of patients with Noonan syndrome and pulmonary valve stenosis is the most frequently observed one. Scoliosis and clubfoot is also present in 10-15% of patients with Noonan. None of this mattered to Rachel and Ryan though as they had the child they always wanted. He was their world. Despite all the doctor’s appointments, procedures, challenges, and medicines Reston was on (had to take 9 different meds twice a day just to live), the Prices motto was “Just have fun!” Rachel says to never give up no matter how tough the situation gets. “Always celebrate the small achievements; it will give you the motivation to keep working towards the bigger goals”. The Prices would have dance parties every day because Reston loved to dance. Not dwelling on what Reston couldn’t do allowed them to enjoy what he could. Having a good quality of life was important to them and allowed Reston to thrive in his own way. Reston was attending the Golden Key Academy where he was learning so much. Teacher Miss Liz and Nurse Amy were two of Reston’s favorites and he knew which buttons to push to get his way. Although he could be ornery, rowdy, and feisty he was always smiling and fighting through whatever challenge presented itself. He was also starting out in T-ball and really enjoying that.

In Early May of this year, Reston had 6 procedures scheduled including a tonsillectomy and another surgery for his clubfoot. Sadly, on May 8th he was getting a new cast for his foot and when they removed the original cast a blood clot that had formed unknowingly in his leg was released and traveled through his body causing his sudden death on May 9th. This heartbreaking ending is not the way the Prices want Reston to be remembered though. They want everyone to remember his smile and how he lit up a room the minute he got in it. Remember his fighting spirit even when he was going through the worst. Remember how much he loved his teachers, nurses, and Grandparents, especially Mamaw, Robbie Lesher who Reston admired. Remember how much he enjoyed dancing and listening to music and loved being in hot tubs. Reston was Rachel and Ryan’s world and we at Special Needs Living magazine are so honored that we were able to learn about Reston and honor him in our magazine. We want to extend our sincerest condolences to everyone who loves Reston Price.

"Those who have held in our arms for a short while we hold in our hearts forever." -Author Unknown