For one Mechanicsville family, the start of this school year is a time to celebrate. The youngest member of the Patton family, Will Patton, is 5 years old. And today he starts kindergarten … just like any other child his age.
It’s the normalcy of this school year that gives the Pattons reason to celebrate. In February, Will was the recipient of a life-saving kidney transplant at Children’s National Medical Center in Washington, D.C.
His mother, Erin Patton, describes the past year as a series of “ups and downs.” There was the upsetting news in October last year that Will had a life-threatening disease, the worries about getting the best medical care and worries about paying for it all. There were also highs, she said, like when a kidney was found that Will could use and the groundswell of support from family and friends that helped them through the experience.
“It’s been a roller coaster,” Erin said Friday afternoon.
In the fall of last year, the Patton family received news that Will, then 4 years old, needed a kidney transplant. The Pattons had always been concerned that their son was small for his age for most of his life height and weight wasn’t even listed on the growth charts that pediatricians use for his age. In addition, he tired more easily than one would expect for ayoung child.
“He was the kind of kid who at 3 [years old] would come to me at 7 p.m. and ask if he could go to bed,” Erin said.
The family switched doctors last fall and the new pediatrician ordered some bloodwork that showed the reason for Will’s slow growth. It was Oct. 15, 2010, when Erin took Will to his pediatrician for a follow-up on some bloodwork. They were immediately sent to St. Mary’s Hospital in Leonardtown for a repeat of the lab tests as the first results showed concern with Will’s kidney function. When confirmation came back that Will’s kidneys were failing, the Patton family was sent to Children’s National Medical Center in Washington, D.C., for immediate admission.
During the next five days at Children’s, they learned that Will had end-state renal disease and was need of a kidney transplant. This news came as quite a surprise as Will showed few symptoms of this disease, which apparently is something he was born with, Erin said.
The next few months were a whirlwind of doctor appointments, laboratory tests and paperwork to ensure Will was listed on the organ donor registry before the Christmas holiday. During this time, Will’s diet was significantly restricted as his kidneys were unable to filter out impurities in his body. Will turned 5 in December, and his favorite foods like milk and pizza were off the menu.
On Jan. 3, Erin received a call that a kidney match was available for him and they should come to the hospital immediately. Unfortunately, Will was sick with a stomach virus that day, and the doctors said it would not be possible to do the transplant while he was sick. The family was devastated and started pursuing the option of a living donor more aggressively. Will’s great-aunt was approved as a living donor at the end of January. However, before the surgery was scheduled, another kidney became available from a deceased donor and on Feb. 7, Will received a second chance at life.
During this whole process, Will’s family says he understood very clearly what was happening, what the doctors were saying and they talked openly about the transplant process and how this will affect him for the rest of his life. He will need to take medication to discourage organ rejection and will likely need another transplant within 10 to 20 years.
This didn’t stop Will from being a happy 5-year-old even during his hospital recovery (which took three months rather than the two weeks expected, due to complications of pancreatitis and a bowel obstruction). Will rode his bike up and down the hallways of the hospital, played magic tricks and even had an Easter egg hunt with other patients.
Finally, on April 25, Will returned home. He has regained his weight and no further complications have surfaced. He is able to start kindergarten this year and resume his life just as any other 5-year-old child should. Will said he enjoyed picking out his school supplies and looks forward to his first bus ride with his neighborhood friends.
Erin and Billy Patton say their son’s positive attitude and love for life never faltered and this helped them through this trying time. They received tremendous support from their parents, siblings, other family members, friends and even strangers, Erin said. “We have received huge support from our church … Trinity Episcopal in La Plata,” Erin said. Everything from monetary donations to assist with the expense of being at the hospital for three months to frequent hospital visits to give Will somebody new to play with and let his parents take a break.
Will’s older sister, Haley, 11, was also affected by this ordeal. The support she received as well made a huge difference in understanding her brother’s illness and his need for her parent’s attention.
Erin suggests to other families going through a similar experience, “Don’t be afraid to ask for help, recognize you’re not perfect and you can’t do everything, and work with the health care providers to ensure your child receives the best medical care available.”
Will’s parents admit they had never really thought about organ donation prior to this experience. “It wasn’t something I was against or afraid of; just something I had never given much thought to,” Erin said. They now urge everyone to be a hero and save a life (or more) by talking with their loved ones and letting them know their wishes regarding organ donation. “Don’t assume you aren’t healthy enough or are too old; let the doctors make that decision,” Erin said.
See www.donatelifemaryland.org is the MD state registry for organ donation and provides more information on what it means to be an organ donor.
But organ donations are expensive. Just the surgery for Will’s transplant cost $365,000, Erin said. And while the family has insurance, the Pattons’ out-of-pocket expenses for co-pays and deductibles and other costs is estimated at $60,000.
The Pattons have partnered with the Children’s Organ Transplant Association (COTA) to help raise money for transplant related expenses. One hundred percent of COTA donations go directly to the family for transplant-related medical expenses and are tax deductible. Donors can contribute online or at any Bank of America location. A team made up of Theresa Adams of Fort Washington, Lindsey Welch, Lauren Goldsmith and Allyson Krenke, all of Mechanicsville, and Wendy Latimer and Kacy Cavalier, both of La Plata, and Kim Sheckells of Pomfret, has formed to oversee fundraising for Will’s medical expenses. A fundraising event is planned for next month at the Mechanicsville Moose Lodge.
Will is “growing very quickly,” Erin said. “He has much more energy.”
Staff writer Susan Craton contributed to this report.
For more information about Will Patton and fundraising taking place to assist with his medical expenses, see www.cotaforwillp.org.
A Family Fun Day Benefit to assist Will will be held Saturday, Sept. 17, at Mechanicsville Moose Lodge.