Nicklaus Children’s Health Care Foundation and The National PKU Alliance
ALDIE, Va., Aug. 17, 2022—As regional amateur golfers and a cadre of PGA Tour players excitedly tee off at the tenth annual Creighton Farms Invitational Golf Tournament on Monday, August 22, it will be because one of the greatest golfers of all time—Jack Nicklaus will be there. Yet, many of the participants will have no knowledge that within the neighborhood, a family and a little boy anxiously await the outcome of the funds raised. Two noteworthy charities will benefit from this year’s tournament—the Nicklaus Children’s Health Care Foundation and The National PKU Alliance. Both have contributed to finding a cure for PKU, a rare condition that some children are born with. It is such a serious condition that all babies in the U.S. are tested for PKU soon after birth.
Jill and Jerry Elkins and their family are members at Creighton Farms and they know first-hand the challenges and anxiety of PKU. When their twins Hudson and Charleston were born eight-and-a-half years ago, Hudson was diagnosed with PKU.
PKU is short for phenylketonuria, a rare inherited disorder that’s incurable in which the body cannot break down the amino acid phenylalanine. Amino acids help to build protein in the body. When phenylalanine can’t be processed, a dangerous buildup can develop that can lead to major health problems, including brain damage and slow damage to the central nervous system. Newborns with PKU initially don’t have any symptoms but without treatment, babies with PKU usually develop signs within a few months. According to the March of Dimes, one in 10,000 to 15,000 babies is born with PKU.
For a child to inherit PKU, both the father and the mother must have and pass on the defective gene. Most often, PKU is passed to children by two parents who are carriers of the disorder but don’t know it. Even if both parents carry the gene, there’s still only a 25% chance the child will inherit the disease. If only one parent carries the defective gene, there’s no risk of the child having PKU.
For the rest of their lives, people with PKU—adults, children and babies, need to follow a strict diet that limits phenylalanine, which is found in almost all normal food.
The Elkins family have lived with Hudson’s condition since birth. Charleston does not have the condition so she’s able to help with some of the care and watching over her twin. “Hudson has to eat mostly medical food to ensure he doesn’t consume more protein than his body can process,” explained Jill Elkins. “Right now, a quarter of an egg or two slices of normal bread is more protein than his body can process in day.” Hudson can also have a few fruits and vegetables and everything is weighed and carefully measured. “Eighty percent of Hudson’s nutrition is a medical beverage,” Elkins adds.
Hudson also has to undergo regular blood tests to ensure his blood measurements are not too high in protein. PKU has required weekly blood draws for Hudson as a baby through his first year. Now he has monthly blood tests. Still the tests are a big inconvenience as the blood has to be shipped to a lab and then the Elkins wait on test results for one to two weeks.
“Unlike the modern technology and equipment that diabetics can rely on where they can do in-home monitoring and don’t require regular blood sticks, tests for PKU are still way behind,” added Elkins.
She also points out that everyone needs protein for energy and proper growth and Hudson is no exception. The amount however is extremely small and measured. “If he were to eat the wrong thing, irreversible brain damage could occur,” Elkins said. Additional possible symptoms include neurological problems such as seizures and tremors; behavioral, emotional and social problems in older children and adults; and major health and development problems.
She worries too about his attending school this fall and his life as he goes into his teen years. “I’m just terrified that he’ll eat the wrong things and go off this cumbersome diet, and studies have shown that more than 75% of patients are unable to maintain this very restrictive diet,” she said.
In spite of all of this, Jill Elkins is optimistic, “There are a lot of possible treatments and cures on the horizon,” she added. “I just want to expedite them and funds from the Creighton Farms Invitational golf tournament will help to get to a cure quicker. I want Hudson to have a cure in his lifetime.”
The Creighton Farms Invitational was created in 2012 by Southworth Development LLC, the company that owns and operates Creighton Farms, a community featuring an award-winning Jack Nicklaus Signature Golf Course in Loudoun County, Va.
“The Creighton Farms Invitational has grown significantly over the years and is an event that Southworth and the Creighton Farms community are increasingly proud to host year after year,” said Tommy Southworth, president of Southworth.
“In ten years, this event has raised $7 million for children’s health-care initiatives, and it brings us great joy to continue this tradition of raising funds for children, while providing a charity golf tournament experience unlike anything else in the region,” Southworth added.
The 2022 Creighton Farms Invitational hosted by Jack Nicklaus takes place on August 21 to 22, culminating with the golf tournament at Creighton Farms on August 22.
For more information on the Creighton Farms community, visit www.CreightonFarms.com.
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About Creighton Farms
Located in picturesque Northern Virginia horse country, Creighton Farms is just 20 minutes from Dulles International Airport and 55 minutes from downtown Washington D.C. The 900-acre gated community offers one to seven-acre home sites with dramatic views of the stunning rolling horse country landscape, nearby mountain range and picturesque golf course, plus a choice of exceptional homes ranging from exquisite villas to extravagant legacy homes. This extraordinary private community features an unprecedented list of amenities including an award- winning 34,000-square-foot clubhouse complete with full-service locker rooms, steam rooms, golf shop, meeting space, pub, massage rooms, resort-style pools, two-story Fitness Center, Har-Tru and all-weather tennis courts, a state-of-the-art golf performance center, and private club rooms for overnight guests. Since opening in 2008, the Jack Nicklaus Signature Golf Course here has received such accolades as being named one of the “Best New Private Courses” by the likes of Golf Digest, Golf Magazine, Golfweek and T+L Golf. Creighton Farms is also home of the annual Creighton Farms Invitational hosted by Jack Nicklaus, a tournament created to benefit local children’s healthcare charities for which it has raised over $7.5 million to date. For more information about building a custom home at or becoming a member of Creighton Farms, please visit CreightonFarms.com
About Southworth Development LLC
Southworth Development is a privately held company that specializes in the development of residential resort and amenitized real estate communities. Through wholly owned subsidiaries Southworth Golf and Southworth Europe, Southworth is also a leader in the international golf community, having served as owner, manager, consultant or construction manager to dozens of properties throughout the United States, Scotland, The Bahamas, Puerto Rico and The Dominican Republic. Located in Newton, Massachusetts, USA, Southworth was founded in 1991 and currently owns and operates private clubs and residential communities in Massachusetts, New Hampshire, Virginia, Scotland and The Bahamas. The properties include: Willowbend on Cape Cod, Mass.; Renaissance on Boston’s North Shore; Meredith Bay on New Hampshire’s famed Lake Winnipesaukee, Creighton Farms in Aldie, Va. 35 minutes west of Washington, DC; The Village at Machrihanish Dunes in Argyll, Scotland; and The Abaco Club, located on Great Abaco Island in The Bahamas.