British Toddler With Extremely Rare Disease Flown to Ohio for Life-Saving Treatment

The family of Lex Munneke-Corbett, a 4-year-old boy from London, is preparing to fly to Central Ohio Sunday, July 17, 2022, so that he can get started on his treatment for an extremely rare disease.

Lex has been diagnosed with spinal muscular atrophy with respiratory distress type 1 or SMARD1, per ABC 6. Globally, fewer than 100 cases are on record for this condition, which is characterized by several indicators like respiratory and orthopedic abnormalities, gastrointestinal issues and neuromuscular problems.

His parents were told of the diagnosis when Lex was 14 months old when he suddenly stopped breathing while his mother was tending to him. A series of heart attacks and strokes followed as a result of a faulty gene in Lex's DNA but the toddler was revived and saved each time.

Parents Jacob Munneke and Jennifer Corbett, who both work as British neuroscientists, went back and forth to a London hospital with their son for the next eight months. They were told of a grim future, where doctors projected that Lex would not live past the age of 2 years old.

But the parents later learned that their son's condition could only be treated at the Nationwide Children's Hospital in Columbus, Ohio, where a new drug application or gene therapy for patients with SMARD1 was on trial. As scientists, the parents were aware of the drug's promise and have been hoping that Lex could be part of the study. The drug is a one-off but the trial will have to be monitored for three years.

The desperate need to fly to Ohio

The family then opened a GoFundMe page to raise funds for Lex's angel flight to the U.S. The parents said they needed extra funding to sustain their son's medical needs until the insurance can take over.

They also had to secure jobs that will help with their new but challenging life in another country. Jacob and Jennifer have signed contracts to become professors at the Ohio State University beginning in August 2022 but they also need to find an apartment and buy items for their home.

The family is basically starting over so they could be nearer the hospital where Lex's SMARD 1 can be managed. Suffice it to say, the fundraiser was a desperate need knowing that their son's life-saving treatment is "one medical flight away," per Yahoo Life.

After more than 280 donations, the Munneke-Corbett family was able to raise over $21,000, which was still short of their goal to reach $280,000. However, by July 4, the family wrote an update on their GoFundMe page that their flight to the U.S. was already paid for, which means that Lex is days away from getting access to the Nationwide Children's Hospital.

Lex remains a ball of joy

Despite his medical condition and near-death experiences, Jennifer said that her son remains a ball of joy. He loves watching Sesame Street and enjoys listening to songs from Moana.

The toddler is also getting used to his speaking valve, which has allowed him to communicate with his parents. Lex's vocal abilities are limited since he had a tracheostomy during the early months of his diagnosis.

Though the parents have reached several breaking points, their toddler continues to inspire Jacob and Jennifer to fight for him. They are looking forward to doing the normal stuff with their son, such as eating ice cream, going to the supermarket, or arguing about school snacks.