Brody Osga has been looking longingly at the sun for four years of his young life.
But the rare condition of Brody makes him so sensitive to the sun that even a short drive in a car window can leave the toddler with painful blisters.
He was born prematurely, weighing just over two pounds, and getting sicker and sicker while doctors rushed to find out why.
After surgery after surgery and a revolving door of specialists, Brody was finally diagnosed with Chiari malformation III, a brain and skull defect that causes him to have chronic pain and cannot eat, in addition to being trapped indoors.
But for his fourth birthday, his family, community, and the Make-A-Wish Foundation made the impossible possible – by creating a special tent behind Brody’s house where he could run, laugh and play with other children all day.
For his fourth birthday, Brody OSga was allowed to ‘go outside’ in a special tent for the first time. He suffers from a rare brain and skull defect and is so sensitive to sun that his skin blisters after being exposed for only a few minutes
Brody’s mother, Julia Rubin, was only 26 weeks old when she gave birth.
Her little son was born with a weight of just two pounds and an ounce.
Initially, doctors attributed Brody’s general illness to his very premature birth, but his condition only worsened as he grew older and older.
Brody always got infections, including pneumonia.
That went on for weeks, then for months. Almost a year and a half passed and yet Julia could not have brought her son home.
In the end, the little boy couldn’t even eat.
His medical team continued to operate and perform more tests – it seemed that once they had solved one problem, another would arise.
A feeding probe, countless surgeries, about 18 months and as many sleepless nights for Julia, she finally got an answer from his doctors.
Chiari malformation, the state of Brody, exerts enormous pressure on a part of his brain that controls his digestion, balance, speech and many other elements of his functioning
Brody has Chiari malformation III. Although she wanted some clarity, this was hardly good news.
Chiari malformations are rare brain and skull abnormalities.
In Chiari malformations, the skull does not develop well and is not the right shape or too small for the brain.
As a result, the part of the brain that is at the base, called the cerebellum, is pressed down into the small opening at the base of the skull, connecting the spinal cord to the brain.
For some patients, the symptoms of the condition are not noticeable.
But in the severe case of Brody, the cerebellum is pressed hard into the spinal canal, placing the area of the brain that controls the toddler’s speech, balance, digestion, swallowing, and breathing.
After being born for only 26 weeks, Brody spent nearly the first year and a half of his life in the hospital
He lives in constant pain and has to wear a special backpack that feeds him at all times. It is not clear how Brody’s Chiari malformation causes his incredible sensitivity to the sun.
After eighteen months in the hospital, Brody’s community and mother had to launch a fundraising to create a room that was equipped for his care in Julia’s Griswold, Connecticut, at home.
But Brody took a turn in 2017, according to his Go Fund Me page.
Doctors informed Julia that children with severe Chiari malformations such as Brody’s often do not mature. They handed over her brochures on resources for the families of terminally ill children.
One was for the Make A-Wish Foundation.
“I thought the best wish would be something he couldn’t do like an ordinary child,” Julia told InsideEdition.com.
“We wanted a playroom that he could play outside.”
Make-A-Wish has found a British company that makes specialized tents that block dangerous UV rays and keep the temperature inside.
Doctors have told Julia Rubin, Brody’s mother, that he may not live long, so she made a wish on behalf of the Make-A-Wish Foundation. She wished her son could go outside, so the foundation helped her get a special tent with grass for his birthday. Pictured: Brody ‘outside’
The wish was two years in the making.
But Brody grinned from ear to ear as he walked out his back door to play in the outside world for the first time.
In the tent, the family’s deck was covered with fake grass that was safe for the little ones.
Barefoot he jumped up and down in excitement and splashed around in the water table – the closest he got to swimming, because the electronics of his food backpack limited Brody to dry land.
“I’m just very grateful that everyone helps me and Brody helps,” Julia said.
“Being a single mother is hard, so I could never do this on my own.”
But with the help of the community, Brody now has his own unique outdoor space to enjoy.