Rebekka, the mother, fills the pipette and drips three drops of the cannabis medication dronabinol into Ava's mouth. The little girl currently receives this natural medicine three times a day: her condition has improved significantly since then. But let's start at the beginning:
Ava and her twin sister Lia were eagerly awaited: "Everyone around us, including their two older siblings, was overjoyed when I became pregnant again. Twins! How wonderful to imagine them growing up together, playing and learning," says their mother, Rebekka L. But unfortunately, fate had other plans. The twin girls were born much too early. Because they were so tiny, the girls were given artificial oxygen and a feeding tube in the neonatal unit. After two days came the shock: Although she was the bigger of the two, Ava's lungs collapsed on the second day after her birth. "We were so worried. Rebekka and I took turns at the incubators for our two girls. They were so tiny, but they fought bravely and wanted to live,"recalls their father, Martin Z. (49).
There's good news and bad news
About a week after the birth, the doctors performed a routine cranial ultrasound on the twins. The good news: Lia was healthy. The bad news: the ultrasound showed abnormalities in Ava. A dark spot was visible, growing larger every day. "The spot kept getting bigger. The doctors couldn't do anything. We could only watch helplessly as Ava's brain was damaged," Rebekka recalls sadly. Further tests revealed that Ava had cystic periventricular leukomalacia (see box below). Either before or after the pregnancy, parts of Ava's brain were not properly supplied with oxygen, damaging the white matter. For the family and those around them, this was devastating news that raised many questions: How severely disabled would Ava be? How would she develop?
In the following weeks and months, the effects of Ava's birth defect became apparent: While her twin sister learned to sit, eat, crawl, and eventually walk independently, little Ava had bilateral motor impairments and cognitive difficulties. She also had increased muscle tone and, as a result, spasticity—very likely painless. In addition, Ava was visually impaired and could only perceive her surroundings indistinctly in black and white. "For us as a family, especially for me, it was initially very difficult to accept that our two twin girls would probably lead very different lives. But the most important thing for us is that they are both happy," says Rebekka.
Best possible support for Ava
And the family does everything they can to make it happen. From the very beginning, Ava has received physiotherapy, occupational therapy, and low-vision therapy at home. The latter specifically targets and improves her existing vision. In 2019, the SRF program "Happy Day" surprised the family by gifting them several daylight lamps, which illuminate all the important rooms with a pleasant, bright light. This has been very helpful for the progress of Ava's low-vision therapy. Rebekka and Martin also work with Ava daily: "For Ava's development, it's crucial that her brain is stimulated as often as possible by external stimuli—be it movements, words, music, or vision exercises,"says Martin. And the therapy is working: Ava is developing at her own pace, making small steps forward—while her twin sister, Lia, is surpassing her in development by leaps and bounds.
Pioneer family in cannabis therapy…
Early on, Ava's parents decided to try cannabis therapy for her. While they largely encountered ignorance and a lack of understanding from doctors, the Egg Pharmacy in Muri (AG) . From the age of two, Rebekka and Martin gave Ava CBD drops several times a day to combat her spasticity – with success. Since autumn 2021, Ava has also been receiving the THC-containing medication dronabinol. To be able to treat Ava legally with the medication, the parents convinced Ava's neurologistlogin submit an application to the Federal Office of Public Health (FOPH). Taking dronabinol has had very positive effects on Ava's health: her spasticity has decreased as a result of the treatment, she has become generally calmer, and even bowel movements, which are often difficult for children with her diagnosis, have become easier association" It takes an incredible amount of personal initiative and perseverance to be allowed to treat a toddler with cannabis. Information is scarce, and research is literally still in its infancy." "The potential is huge,"says Rebekka, sharing her experiences.
…and in crowdfunding
Because Rebekka and Martin wanted to leave no stone unturned in their quest to improve Ava's health, they researched and found a stem cell therapy in Bangkok, Thailand. But how were they to pay for the $36,000 treatment? In 2019, the family quickly launched a crowdfunding campaign, and within ten days, they had raised the necessary amount. Their family, friends, acquaintances, people from the village, from the surrounding area, and even strangers who had heard their story through the grapevine all donated. "For example, a man we didn't know from the village stood at our door with an envelope containing a donation of 2,000 Swiss francs," Rebekka recalls, almost moved to tears. "And we receive a lot of other support as well. Neighbors, for instance, ask if we need anything when they go shopping. We really appreciate this help."
Things are moving forward with Ava
Due to the COVID-19 pandemic and Thailand's strict entry requirements, Rebekka was only able to travel to Thailand with Ava for stem cell therapy in the spring of 2022. The two spent the first ten days in quarantine on the holiday island of Phuket. Ava then received a total of eight adult stem cell injections, three days apart – approximately 1.6 million in total. The stem cells were administered five times via lumbar puncture and three times intravenously. They are capable of forming skin, blood, muscle, bone cells, and much more. And they can also develop into neurons in the brain – Ava's great hope.
In addition to stem cell therapy, Ava received intensive physiotherapy, occupational therapy, visual therapy, and hydrotherapy at the specialized clinic in Thailand. "The stay in Thailand was exhausting for both of us, but also incredibly valuable. Ava can now grasp objects, lift her head, has better control of her torso, and has made cognitive progress. She's the same Ava, yet a new Ava," Rebekka enthuses. Especially in the weeks following their return from Thailand, Ava has made further progress every day. The switch to a protein-rich, sugar-free diet is also doing her good.
After an anxious wait, the family secured one of the rare places at the neurological children's rehabilitation center in Affoltern, part of the University Children's Hospital Zurich, approximately three months after Ava's stem cell therapy. This was extremely important, as the first few months after stem cell therapy are crucial for further progress. Following a demanding adjustment period, during which Rebekka and Martin took turns caring for Ava at the clinic, and friends and family helped with the care of their other three children, the little girl has settled in. The intensive, comprehensive support is paying off: Ava recently picked up and ate a cracker on her own for the first time.
Wishes for the future
Thanks to the progress made in therapy and the cannabis treatment, the family is hopeful that Ava's condition will continue to improve. They would like to see more accountability from politicians: "It would be wonderful if it were easier for parents like us to try cannabis therapy with and for our child. There is also a great need for improvement regarding medical support from doctors. Furthermore, more rehabilitation therapy places for children like our Ava are needed. The political will to provide adequate support and care for people like Ava is simply lacking. This makes it all the more important that organizations like medcan.ch exist, fighting for us!"
"Our example should encourage other families to try cannabis therapy for their child."
Rebekka L., Ava's mother
Become part of Ava's life or donate towards the accessible renovation of the family home:
www.4ava.ch
To find out what else Ava gets up to, check out her Facebook page:
www.facebook.com/4ava.ch
