Lex Munneke-Corbett is a four-year-old boy living in England with an extremely rare rapidly degenerative muscle-wasting disease known as Spinal Muscular Atrophy with Respiratory Distress or SMARD1.
SMARD1 affects the motor neurons in the spinal cord, meaning that patients rapidly lose the ability to walk, sit, stand, or move much at all.
Lex 's doctors said he wouldn't likely live past two. His parents fought for him and though he needs machines to keep him alive, he has lived two and half years longer than expected.
Many of Lex's doctors have said there isn't a cure and seem to paint a grim picture for Lex's parents.
There does appear to be some hope on the horizon however, if Lex can get on a medical flight, a costly ambulance in the air where someone in need of constant medical monitoring can be cared for as needed. The total cost is around $250,000 from London to Columbus Ohio where a clinical trial for SMARD1 is being conducted.
What does this have to do with Northwest Pennsylvania?
SMARD1 affects the motor neurons in the spinal cord, meaning that patients rapidly lose the ability to walk, sit, stand, or move much at all.
Lex 's doctors said he wouldn't likely live past two. His parents fought for him and though he needs machines to keep him alive, he has lived two and half years longer than expected.
Many of Lex's doctors have said there isn't a cure and seem to paint a grim picture for Lex's parents.
There does appear to be some hope on the horizon however, if Lex can get on a medical flight, a costly ambulance in the air where someone in need of constant medical monitoring can be cared for as needed. The total cost is around $250,000 from London to Columbus Ohio where a clinical trial for SMARD1 is being conducted.
What does this have to do with Northwest Pennsylvania?
Lex is the grandson of former Crawford County commissioner Kerry Corbett and his wife Sandi, a long-time music teacher in the Crawford Central School district. His mom is Jennifer Corbett who was a district champion discus champion and graduated from MASH in 1997.
Several area teachers, former colleagues of Sandi are trying to help spread the word of a fundraiser to help their old friend's family in a time of need.
It's been a rough couple years.
"We had no idea until he stopped breathing in his mother’s arms one morning when he was 14 months old," wrote Sandi Corbett last week. "He suffered 4 heart attacks and a stroke. Luckily with CPR and a fast ambulance response, Lex lived. We spent the next 8 months fighting a hospital that only wanted to end his life. Eventually, we won, and Lex has been safe and (VERY) happy at home for over 2 years now. We were told that there was no way he would live past 2, and he is currently almost 4.5 years old and going strong. We were told that there was no hope for any treatment or cure - one doctor even laughed in our faces when we told them about potential gene therapy in the US."
In October 2021, clinical trials for Lex's gene therapy were announced at Nationwide Children's Hospital in Columbus, Ohio. It is a three year study requiring several trip back and forth from the hospital. "We realized the only way to save Lex was to move there," Jennifer wrote. She and her husband, Jacob Munneke, have already secured jobs in Ohio and Lex is enrolled in the study.
They just need to get him here.
Several area teachers, former colleagues of Sandi are trying to help spread the word of a fundraiser to help their old friend's family in a time of need.
It's been a rough couple years.
"We had no idea until he stopped breathing in his mother’s arms one morning when he was 14 months old," wrote Sandi Corbett last week. "He suffered 4 heart attacks and a stroke. Luckily with CPR and a fast ambulance response, Lex lived. We spent the next 8 months fighting a hospital that only wanted to end his life. Eventually, we won, and Lex has been safe and (VERY) happy at home for over 2 years now. We were told that there was no way he would live past 2, and he is currently almost 4.5 years old and going strong. We were told that there was no hope for any treatment or cure - one doctor even laughed in our faces when we told them about potential gene therapy in the US."
In October 2021, clinical trials for Lex's gene therapy were announced at Nationwide Children's Hospital in Columbus, Ohio. It is a three year study requiring several trip back and forth from the hospital. "We realized the only way to save Lex was to move there," Jennifer wrote. She and her husband, Jacob Munneke, have already secured jobs in Ohio and Lex is enrolled in the study.
They just need to get him here.
"Lex is extremely fragile and needs so many machines, including a ventilator that breathes for him via a tracheostomy, " Jennifer said so just hopping on a plane isn't an option. A couple different fundraising sites have been set up that also deal with the currency conversions from U.S. currency to British pounds.
"[We] started fundraising like crazy. We need so much money. Since we are in a different country, no one really cares about Lex here. That's why we are reaching out to my hometown in Meadville. Because there are only about 60 cases of SMARD known, there will never be another place or time that Lex can receive gene therapy and without it, the disease will surely progress and we will lose him in the next few years."
A link to Lex's US fundraiser can be found here: https://www.gofundme.com/f/save-little-lex-usa
Because the family lives in the UK and Lex's dad is Dutch, there are fundraisers in two other currencies. The master link to all the fundraisers is here: https://linktr.ee/savelittlelex
A Zoom BINGO fundraiser is planned to help raise additional funds. Register online by visiting www.meadvillelions.com to order Bingo packets that will be mailed to you. The Bingo game is scheduled for 7 p.m. May 26.
" Lex is a really special little guy and we appreciate all the help we can get to bring him home to the US for treatment," said Jennifer, whose grandmother, Mabel Giles, still lives in Meadville at 96 years of age.
The family hopes to be in the U.s. bu July 17, 10 days before Lex's first scheduled appointment with the doctors at Nationwide.
"He is our whole world and we will do anything for him," Jennifer said. "He is a ball of joy, who makes everyone he meets smile. He is the definition of hope."
"[We] started fundraising like crazy. We need so much money. Since we are in a different country, no one really cares about Lex here. That's why we are reaching out to my hometown in Meadville. Because there are only about 60 cases of SMARD known, there will never be another place or time that Lex can receive gene therapy and without it, the disease will surely progress and we will lose him in the next few years."
A link to Lex's US fundraiser can be found here: https://www.gofundme.com/f/save-little-lex-usa
Because the family lives in the UK and Lex's dad is Dutch, there are fundraisers in two other currencies. The master link to all the fundraisers is here: https://linktr.ee/savelittlelex
A Zoom BINGO fundraiser is planned to help raise additional funds. Register online by visiting www.meadvillelions.com to order Bingo packets that will be mailed to you. The Bingo game is scheduled for 7 p.m. May 26.
" Lex is a really special little guy and we appreciate all the help we can get to bring him home to the US for treatment," said Jennifer, whose grandmother, Mabel Giles, still lives in Meadville at 96 years of age.
The family hopes to be in the U.s. bu July 17, 10 days before Lex's first scheduled appointment with the doctors at Nationwide.
"He is our whole world and we will do anything for him," Jennifer said. "He is a ball of joy, who makes everyone he meets smile. He is the definition of hope."
RSS Feed