Local family with child with PKU hopes funds raised will lead to a cure
ALDIE, Virginia – 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 10 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 Aug. 21-22, culminating with the golf tournament at Creighton Farms on Aug. 22.
For more information on the Creighton Farms community, visit www.CreightonFarms.com