For some parents, learning your child is using cannabis products might cause trouble or upset. Joanne Griffiths is troubled and upset because her son might lose his supply.

According to the Lancashire Post, since the birth of their son Ben, the Griffith’s of Much Hoole, England, have garnered strategies to deal with the incessant epileptic fits Ben experiences all day long, hundreds of times a day. They are a characteristic of his form of cerebral palsy.

Cerebral palsy is a rare neurological disorder characterized by impaired movement. People with the disorder don’t have control over their muscles, impairing their ability to coordinate their movement. The disease is believed to be caused by damage to the person’s brain while still in the earliest development from a conception to up to two years of age that could be due to mutations, infections, head trauma during infancy, or a fetal stroke.

Symptoms, in the form of movement and/or metal delays, can vary enormously between individuals. They can include overly stiff or loose muscles, exaggerated reflexes, involuntary movement, the inability to control muscles, slowness, delays in developing motor skills, favoring one side of the body, trouble walks or talking, difficulty swallowing or eating,  seizures, vision or hearing loss, intellectual disabilities, and more. Patients use medications to improve muscle function, manage pain, and minimize injuries and more extreme cases may use surgery or Botox. There is no cure.

Now age 11, the Ben’s family had finally found a strategy that works for him: cannabis, supplied by a Dutch distributor. The internationally sourced prescription came with a lofty price tag; but £2,100 a month was worth the medication’s dramatic results. Ben went from experiencing up to 300 epileptic fits each day to a mere five per day; on lucky days, he makes it through the day episode free.

While the UK had access to the greater slew of European options through their EU membership, their exit from the regional partnership has thrown many economic and political agreements into flux.

This became relevant for the Griffiths in December, when they learned that their access to Ben’s potent prescription hinged upon an agreement that enabled UK prescriptions to be filled by pharmacies across Europe, providing some options that aren’t available domestically.  This was a problem for them because Ben’s doctor sourced his prescription from the Dutch Transvaal Pharmacy. Amidst the renegotiations, their son’s access to his life-changing treatment hung in the ballots, along with his newly improved health. His family received the devastating news that he may lose access, but Ben’s mother Joanne explained any disruptions to his treatment plan would surely have consequences in her family. She said,

However, while the family held their breathe as their son’s health plans oscillated, their need had caught the attention of their government. On Friday, January 22nd, the Griffiths could let out a sigh of relief—the Minister for Prevention, Public Health and Primary Care, announced that patients could count on their access a little longer—all of the UK’s patients would maintain their prescription and access to the greater EU medicines until at least July* of 2021. The Griffith’s MP, Katherine Fletcher of South Ribble, explained she had recognized the gravity of ensuring steady access to vital medicines for many families across the UK. She said that she’s been working behind the scenes on the behalf of Ben, and the Dutch government has agreed to allow access to these treatments for existing UK patients until July 1, 2021. She stated,

“This news will I hope bring enormous relief to Joanne and to Ben and I am hugely grateful to my colleagues in the Department of Health and Social Care and to the Dutch Government for working together so closely and quickly on this”.