pregnant mother and infant placing hand on her pregnant belly

Toddler tragically dies days before brother is born from rare disease triggered by COVID-19

The Edwards family from Brisbane, Australia, were excited about their new baby. The parents, Krystal and Steven Edwards were expecting their first son, and their eldest child, Ruby, was overjoyed to become a big sister. However, this happy time turned tragic when 23-month-old Ruby contracted COVID-19. The infection triggered a rare autoimmune disease that killed the little girl two weeks before her second birthday. And six days before her brother was born.

She Died From a Rare Disease Just Before Her Brother’s Birth

Ruby became sick very suddenly. Eventually, her parents gave her a COVID-19 test and she tested positive. They were surprised because young children were less susceptible to the virus compared to adults; they are even less likely to become severely ill. [1] However, the virus triggered what is known as Acute Hemorrhagic Leukoencephalitis (AHLE), an extremely rare neurological condition characterized by intense inflammation in the brain and spinal cord.

Advertisement

This triggered a rare auto-immune condition, where her immune system, while trying to fight the virus, also attacked her brain, affecting her vital functions,” Steven Edwards said about the disease in a social media post. “She fought long and hard but unfortunately, the condition was too aggressive, ruthless and relentless. Thanks to her treatment, we don’t believe she suffered any pain during her fight and was able to leave this world peacefully.

In the midst of the tragedy, the parents had to prepare for the birth of their son only a few days later. “It feels like the world is falling apart for us right now, as we prepare for the arrival of our son … this is supposed to be such a happy time where our family would become complete but is now so broken,” he said. “We are all hurting, we are all in pain, please be kind and be there for each other.

Read: Young father started having ‘migraines.’ It turned out to be glioblastoma

Advertisement
Krystal Edward with daughter and husband
Image Credit: Krystal Edwards | Facebook

We know his big sister Ruby is watching over us”

The parents thanked the staff at the Logan Hospital and the Queensland Children’s Hospital “who did their very best” taking care of Ruby while treating her rare disease. Plus, in an interview with ABC, the father said he didn’t want to “propagate fear but maybe caution and a reminder to cherish those you love because you just don’t know when it can all be taken away from you. She was a gentle soul, loved her cuddles and was adored by all that were fortunate enough to meet her. Ruby had the most beautiful long eyelashes, infectious smile and stunning hair color. She was very clever and had so much potential. It’s a shame her full potential will never be realized and the world has been deprived of such a special gift.[3]

Advertisement

Levi Grayson Edwards was born “healthy and happy,” according to his father’s Facebook post announcing his arrival. “We’re just in awe of him and know his big sister Ruby is watching over us as he was safely guided into this world… Levi brings with him hope and light, a promise of happy times as we look to the future. We’ve got a long road ahead of us but each day with him in our arms and Ruby in our hearts, it will get easier. Although nothing will bring our baby girl back, it will help our family move into the future as we heal.[4] Their friend, Sarah Watton, arranged a GoFundMe page to help the family during this difficult time. It has raised over $33,000 for the Edwards so far. 

Advertisement

What is Acute Hemorrhagic Leukoencephalitis (AHLE)?

AHLE is a rare autoimmune disease that causes an intense attack of inflammation in the brain and spinal cord. This damages the myelin, which covers and protects nerve fibers. This can cause bleeding in the brain, as well as symptoms like fever, fatigue, nausea, headaches, neck stiffness, vomiting, seizures, and a coma. The disease attacks swiftly followed by rapid deterioration. Death usually comes within a few days or after a week of symptoms.

It’s unclear what causes AHLE, but it usually appears after a bacterial or viral infection. Even more rarely, it comes after rabies or measles vaccination. Some experts theorize the infection or vaccination causes an autoimmune response in the body. Because of how rapidly the disease progresses, it’s hard to receive treatment in time, but when caught early enough, immunosuppressant medications and plasma exchange can improve the patient’s chance of survival. [5]

Keep Reading: ‘If I’d Listened To My Doctor, I Would Be Dead Right Now’

Advertisement

Sources

  1. “COVID-19 in babies and children.” Mayo Clinic. June 30, 2022
  2. “Family mourns death of Queensland toddler Ruby Edwards who died with COVID-19.ABC News. July 27, 2022
  3. “Ruby Edwards’s brother born days after the Queensland toddler died with COVID-19.ABC News. Kym Agius. June 30, 2022
  4. “‘In awe’: Ruby Edwards’ family welcomes baby boy days after toddler died from Covid.News.com.au. Belinda Palmada. July 30, 2022
  5. “NIH GARD Information: Acute hemorrhagic leukoencephalitis.Rare Diseases Database
Advertisement