Beckett Lorentzen was born diagnosed with Prader-Willie Syndrome and a brain bleed, making his first steps in life a harrowing one.
He has a G-tube for feeding and is still on oxygen.
Prader-Willie Syndrome causes a lack of upper muscle control and someone with this condition can not tell when they are full from eating.
That’s why his family is needing the help of those who can assist a child find his way to a long life.
“The Brave like Beckett” fundraiser will offer financial aid to his family for ongoing medical bills, travel expenses – with specialists are in Kansas City and Florida and he has regular follow up appointments at St. Louis Childrens - and any supplies needed that insurance won’t cover.
The fundraiser has been scheduled for Beckett, set for 11 a.m. September 24, beginning with a four-point pinch, followed by a cornhole tournament (noon) and a shuffleboard competition (1 p.m.)
“We are looking for items for live and silent auction,” Cathy A Lorentzen-Perkins, Beckett’s great aunt, said.
Any and all donations will be greatly appreciated, Lorentzen-Perkins added.
There will also be a raffle of a John Deere pedal tractor, handmade quilts and University of Missouri football tickets.
“We will have a taco bar and my Eagles sisters will help me put this on,” Lorentzen-Perkins said. “Our motto is people helping people.
Beckett will be going to a specialist for aid in the future to help him with dealing with the syndrome going forward.
“For the most part, Beckett is doing good and he’s up to seven pounds,” Lorentzen-Perkins said. “For the most part, he loves to snuggle with mom and dad.”
Jacob is Lorentzen-Perkins’ nephew, one of eight who she said she “would help each and every one of them.”
“My only child is a 23-year bone marrow transplant survivor, so I know the cost of the medical bills, and many trips to the doctors for follow-up care,” Lorentzen-Perkins said.
Emma Loyd, a long-time friend of Samantha’s, has been there throughout this battle for Bennett’s health.
“I have been Samantha’s best friend since first grade, we grew up together in Auxvasse,” Loyd said. “I practice Occupational Therapy for Missouri First Steps early intervention program so I know first and how much of a struggle any diagnosis can be and am well-versed in Prader-Willie Syndrome.”
Beckett’s parents stayed with Emma and her husband, Dwight, in O’Fallon while their son was in the NICU.
“There were some rough days in the beginning when things were unknown but once they were given answers/a diagnosis they were quick to educate themselves to be able to offer him anything he needed,” Loyd said. “Beckett will have a long road ahead of him with many therapies and specialist appointments. Beckett’s care team at Boone Hospital and St. Louis Childrens reacted quickly and implemented intervention right away which is key in this type of situation.
“His parents are doing exceptionally well adjusting to his needs and have done everything they can to ensure a successful future for Beckett.”
For donations people can contact Lorentzen-Perkins at 573-228-3101 or Loyd at 573-826-5627.
