Planting Love Around the World: A Young Patient with Neurofibromatosis Works to Reduce COVID-19 Anxiety

 

According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact of COVID-19. So she asked her mother if she could build a “Corona Tree.” This project, meant to bring her family luck and comfort, has since inspired people around the world to put up a “Corona Tree” of their very own.

About Neurofibromatosis

Neurofibromatosis is a rare genetic disorder which affects the nervous system. For people with neurofibromatosis, mostly benign, but sometimes cancerous, tumors form on healthy nerve tissue.

There are three types of neurofibromatosis:

Type 1 (NF1)

Type 1 neurofibromatosis generally occurs in childhood. It is caused by a mutated NF1 gene, which leads to a reduction or total loss of the neurofibromin protein. This protein is used to regulate cell growth. Symptoms include bone deformities, learning disabilities, bumps on or under the skin, freckling, and tiny bumps on the iris of the eyes. These normally can be seen at birth.

Mia-Lily has NF1 and has developed tumors behind her eyes.

Type 2 (NF2)

People with Type 2 neurofibromatosis often begin showing symptoms when they are teenagers. It is caused by a mutated NF2 gene, which leads to a reduction or total loss of the merlin protein. This causes uncontrolled cell growth. Symptoms include hearing loss, balance issues, and tinnitus.

Schwannomatosis

Schwannomatosis is the most severe and rare form of neurofibromatosis. Mutations in the NF2 or SMARCB1 gene caused schwannomatosis. People with schwannomatosis will often experience intense pain caused by muscle loss, muscle weakness, and tumors on the skull, spinal, and peripheral nerves.

Learn more about neurofibromatosis here. 

Mia-Lily’s Corona Tree

Like many of us, Mia-Lily felt some anxiety about the global COVID-19 pandemic. Though Ireland, where Mia-Lily resides, has just under 5,000 cases and 158 deaths, the numbers are much greater worldwide: 1.3 million cases, with 70,798 deaths as of this writing.

The 8-year-old is full of energy, enthusiasm, and positivity. So rather than seeing social distancing as a negative, Mia-Lily felt like it was like Christmas: a time of togetherness. So she asked her mother, Ailish, if the family could take down the Christmas Tree and create something else instead: a Corona Tree.

At first, said Ailish, Mia-Lily was scared for the future. The Corona Tree was going to be a way to tackle this fear and create something beautiful:

“She just said ‘I’m scared’ and that she was afraid she might die or that other people might die if they get [COVID-19].”

Together, the family potted a sapling and decorated it with wool and ribbons. They placed it outside of their home. Mia-Lily hopes it will keep the family safe and bring them luck.

Like COVID-19, Mia-Lily’s Corona Tree has gone viral. It started with the principal of her local school erecting a Corona Tree on the property. However, the idea really took off after Ailish posted on social media.

Now, people in America, Australia, and Germany are putting up their own Corona Trees. This aims to inspire hope and a sense of community around the globe.

Ailish isn’t surprised, though. She says:

“I often think the world would be a much better place if left to be viewed through the eyes of a child and they often think of things that adults just wouldn’t.”


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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