Lilly, a five-year-old German girl, is severely disabled. Epileptic seizures dictate her life. The active substances of Cannabis ease her pain.
By Janine Gürtler
Halle (Saale) – When the attack comes on, Lilly’s whole body cramps up. The little girl throws her arms and legs in the air involuntarily, her head bends backward – sometimes almost to her bottom. No sound comes from her lips; she can’t scream. “In this state, she is as stiff as a surfboard”, says her father Christian Damm.
Five-year-old Lilly is severely disabled. Epilepsy and spastic seizures dictate her life. A few weeks ago, the German Parliament passed a law that allows cannabis consumption on prescription. Doctors can now prescribe cannabis for seriously ill people, like cancer patients, who suffer from nausea and vomiting due to chemotherapy, or patients like Lilly, who suffers from epileptic seizures.
Lilly suffers from brain loss
“Cannabis is not a miracle cure,” says Steffi Patzer from the Elisabeth Hospital in Halle, Germany. “But it brings Lilly back a bit better quality of life.” The child neurologist has been treating Lilly with cannabis for almost three years now.
Lilly’s story of suffering, however, began much earlier. She was born a healthy child, but everything changed with an epileptic fit in her second week of life. After that, the seizures came regularly, up to ten times a day.
At one point, when Lilly was six months old, she had a seizure that wouldn’t stop. Physicians call this a “status epilepticus,” a condition that put Lilly in mortal danger. For three weeks she was put in a drug-induced coma. “Nobody knew what she really had,” says Lilly’s father Stefan Damm.
What followed were countless examinations by various doctors. The diagnosis was an extremely rare form of leukodystrophy, a progressive loss of brain tissue. The seizures and cramps that plague her little body are an effect of her disease. “Lilly has no chance of development,” says Steffi Patzer, her doctor. “She will never speak, walk or eat without help.” Cannabis will not change that either. “But without the treatment, Lilly would not be in a livable state,” says Patzer.
Cannabis is still seen controversially as a medication
Cannabis as a medication has been controversial in German politics. Although individual case studies have long proved that active substances of the drug can relieve the symptoms of various serious diseases, there is a lack of high-quality studies on cannabis with larger patient numbers and good methodology, experts say. As a result, the federal government in Germany struggled to officially recognize the drug as a medicine.
Due to the new law, health insurance companies will have to cover the therapy costs with medical cannabis in the future if there is nothing else that could help a patient. Even before the change of law, seriously ill patients could take cannabis – but they had to present a special permit to pharmacies and the whole process is extremely bureaucratic. In addition, patients couldn’t be sure their insurance companies would reimburse them.
Lilly gets cannabis six times a day
Lilly gets cannabis in the form of drops, in addition to the other eight drugs she needs to take. Six times a day, she drinks it dissolved in tea. The effective amount corresponds to the twentieth of a joint. “Lilly is not high,” emphasizes neurologist Steffi Patzer. But it causes the spastic seizures to become rarer and her body to find rest. Lilly’s parents are convinced of the effect, too. “She’s doing so much better. She has a more relaxed life and many states in which she is fine,” says Stefan Damm.
Effects of Cannabis
The medicinal effect of cannabis is still controversial. The plant can relieve discomfort but is not a miracle remedy. Scientists have found that the plant has therapeutic effects, particularly in patients with vomiting and nausea due to chemotherapy, chronic pain, and in patients with multiple sclerosis suffering from involuntary muscular spasms.
In the future, the cultivation of cannabis for medical purposes is supposed to be regulated by the state. The agency at the Federal Institute for drugs and Medical Devices will ensure that cannabis is grown in standardized quality. The agency will then buy cannabis and give it to manufacturers and pharmacies. In the meantime, cannabis will be imported. (jgü)
And yet, the family still faces setbacks. When another seizure torments Lily, you can see the pain in her face. Then she sweats, her heart is racing, she gets restless. One attack was so severe that she broke her leg. “Of course, that hurts us every time,” says father Stefan Damm. He and his wife Anita hug Lilly during the seizures, talk to her, play music. That helps sometimes, but not always. “There are moments that are frustrating,” he says.
For now, there is no cure for Lilly’s disability and her illness has hardly been investigated. “The real cause of Lilly’s disease, we haven’t found yet,” says neurologist Patzer. Nevertheless, Lilly’s parents don’t give up. “We wish that Lilly could still experience many relaxed and awake moments,” says Stefan Damm. “That’s all we hope for.”
