Her Friends Sent Her Picture Into Space to Raise Awareness for Her Rare Condition

Meet Antonia

Antonia Payne-Cheney, also known as Tonia, is a 20-year-old woman from from Eckington, England who suffers from a rare chronic disease classified as Ehlers–Danlos syndrome (EDS) type 3.

EDS is collectively made up of a group of connective tissue disorders, most often characterized by loose joints and elastic skin. The genetic disorder can also cause chronic pain, fatigue, and poor gastrointestinal motility, and it can result in a dramatically shortened lifespan. Approximately 1 in 5,000 people suffer from a type of EDS, and there is no known cure.

Life With EDS

In Tonia’s case, her debilitating EDS has left her completely bedridden, and she has spent years on end in the hospital due to various issues in her skin, blood vessels, organs, and bones. Her symptoms first became apparent when she was 14 years old. In 2017, she was featured on an episode of the BBC One program DIY SOS where crew transformed her home so that she could have quality of life in her own bedroom after the hospital could not help her any further.

Her most threatening symptom is Craniocervical Instability (CCI), a structural instability in the head and neck that is often present in those with EDS. Plainly speaking, this means her brain is being crushed by her own skull as it sinks downward without the proper support of the brainstem.

Left untreated, Antonia’s CCI would surely lead to her death, as she and her family are well aware. Her only hope is a specialized surgery in Barcelona, but unfortunately the procedure costs about $280,000 and is not covered by her health insurance. Antonia and her family have been fundraising to be able to afford the surgery, which is scheduled for April 12, but they still need help. She pleaded, “My condition is now so severe that without the surgery I don’t have a future. All I am asking for is a quality of life and not to be in pain all the time.”

Her mother Victoria also admitted this was Antonia’s “final hope.” She said, “Without this surgery I will lose my daughter. And I just can’t bear the thought of that.”

That’s when her friends devised a way to bring Tonia’s case to the biggest stage of them all…

Up Up and Away

In order to help with a final push towards fundraising, Antonia’s friends Ben Freke and Dan Jepson decided to take her story to the world stage… literally.

As part of the fundraising effort, they launched a high-altitude balloon carrying Antonia’s photo and campaign information into space along with a camera to document the whole thing.

“We both really hope it will raise awareness of Antonia’s plight,” Freke and Jepson commented. “Ehlers-Danlos syndrome is a rare condition and devastating to a 20-year-old who hasn’t begun to live her life as she deserves.”

Watch the entire amazing video above, and please consider donating to Tonia’s cause. Then SHARE this story with your friends to spread the word and help her get her life-saving surgery!