Ruby Pearl, a 1-year-old baby girl from Michigan (USA), is the most important thing in her parents’ life. In fact, she was given her unique name because, as dad TJ Bunker tells People, she’s a “rare jewel”.
As adored and special as she may be, the infant has been faced with a wide array of unfortunate circumstances since birth. According to Ruby’s GoFundMe page, she’s faced terrible conditions such as having several holes in her heart, not being able to see or hear, and suffering from glaucoma, epilepsy, and chronic lung disease.
The aforementioned fundraiser page was started in order to make up for what the family says it’s given up or lost “to help keep our baby girl alive.”
These sacrifices, the family claims, have been enormous. To name a few: they were evicted from their home, and had to sell their business to pay for medical bills.
TJ Bunker, father of Ruby, says that the “odds were stacked against [Ruby],” since mother Margaret VanTongeren found out she had low amniotic fluid while pregnant.
Doctors told the parents that Ruby wouldn’t survive more than a few hours after her birth, but the little girl–whom Bunker calls his “warrior”–has fought and persevered through every step of the way. At only 1-year of age, the infant has laughed in the face of death.
Mother, Margaret VanTongeren, shared the amazing story of her “miracle” baby on Facebook through a page called “Prayers for Ruby“.
She explains on the page that she and her family, which also includes 11-year-old Daron and 2-year-old Tommy, is holed up for now in a 20-foot trailer until they can afford to upgrade to a bigger RV so they can move to Utah, where the drier air will be better for Ruby’s health.
“Our situation is not understood,” Ruby’s parents claim on their infant’s GoFundMe page. Apparently, they’ve been unable to attain medical assistance from Michigan’s state government. Regardless of this, they are blessed to spend every waking second with their brave and strong child.
“I’ve learned that we don’t need a lot to get by,” VanTongeren tells People. “We’re together and that’s what really matters.”
Visit page two to learn the full story of 1-year-old Ruby Pearl, as penned by her parents! Click next to read on!
From Ruby’s GoFundMe page:
Ruby was not expected to survive because so many parts of her were underdeveloped including her brain which has been diagnosed as dandy walker malformation.
Genetics tests were done and only show a 1q44 duplication which does not explain all her anomalies and complications. Ruby is considered very rare and has no overall (headlining) diagnosis.
Ruby has multiple holes in her heart that are still unable to be repaired. She survived through heart surgery at a month old to have her duct clamped and PA banding done, which will lead to another heart surgery eventually.
Ruby has epilepsy and suffered through multiple lengthy seizures that took months to learn how to control. Her seizures all different types and we witnessed her flat line during 1 of them which was the most terrifying thing to witness on our baby girl. Most of her seizures made her heart stop but she is now on 2 medications for them and hasn’t had any in months.
Ruby’s eyes never fully developed and she suffers from high pressures and glaucoma. She was transferred to U of M because there was the only eye doctor in the state of Michigan that could do surgery on her, but Ruby remained severely unstable and we chose not to put her through a 6 hr surgery in hopes to save what vision she does have. The pressures have been 20s to 30s and it rising past 30s is leading to a surgery in order to relieve the pressures since that can be extremely painful. We were told that the way Ruby’s left eye developed it makes her 1 out of 8 in the world known to have it!
Ruby is anemic and had 14 blood transfusions within the first 7 months of her life. She survived through surgery to place a broviac and that has come in handy multiple times especially considering that getting IVs on her is nearly impossible.
Ruby has chronic lung disease, obstructive sleep apnea, and floppy airways which have put her on life support multiple times and we were told many times that she wouldn’t be able to survive without it. In the beginning of February Ruby successfully discharged home from the hospital on 2 liters of oxygen and we struggled to maintain an ICU setting at home with No assistance and constant fear of if Ruby was going to die.
On April 1st Ruby caught double pneumonia which she is at continuous risk of getting and she was so gravely ill we believed the doctors this time when they said she was going to die. She overcame the pneumonia but was suffering in pain while we were told there was no more help for her because of her brain and nervous system.. We knew it was something else so we stood up for our Ruby making our voices heard and we ended up transferring back to where she was born in hopes to receive better care and find answers.
Ruby’s bladder was retaining too much urine causing her the pain so once that was better Ruby was successfully weened off of all the drugs and on June 20 2016 Ruby came completely off of all support and has been breathing really good on her own which none of us expected to happen.
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