The story of Isaac
Hello, my name is Juliana Flores, I’m Brazilian and I have an 11 year old son (Isaac) who was diagnosed with acute necrotizing cephalopathy with a mutation in RANBP2 – ANE3 (basically, Isaac cannot get sick from a viral infection, because contact with the virus causes a reaction in his body that attacks the brain… he had three episodes of encephalopathy or ANE, which left him full of brain lesions. The disease has almost no studies, most are case reports. When Isaac was diagnosed, his case was only known in Brazil… today, I know two Brazilian mothers who reached out to me through social media – one with a genetic mutation and the other without the genetic mutation). It was only during the third episode of encephalopathy, in 2018, that I met @aneinternational, which has just over 250 members and I was able to understand and share the pain of families facing the same thing as us.
In 2021 I released a book, called A Colecionadora de Milagres, in which I talk about the rarity of the disease, the search for a diagnosis and the entire process we went through.
I’ll put the summary of the book below so you can understand a little more:
Juliana’s life changes abruptly when her son Isaac, just eight months old, has severe seizures and goes to the ICU in a serious condition. Upon discovering that he has a genetic mutation that causes brain damage, she also discovers that she must protect him from any kind of virus, as the next crisis could be fatal. Isaac suffers from acute necrotizing encephalopathy (ANE). The disease is rare and survival rates are extremely low.
How to live with this weight on your shoulders? A simple cold could be a death sentence for Isaac. What mother is ready to face this reality? Juliana wasn’t there. She became depressed, had panic syndrome and didn’t understand why she was experiencing all of this. But when he was there on the ground, with nowhere else to run, he remembered the words he heard in that retreat:
– God’s love for you is so immense that he gave his own Son to die on the cross in your place.
And then he thought about God’s pain. How heavy His heart was while Jesus’ body was torn apart on the cross. The crying and prayer, little by little, relieved his soul. She was a scared girl looking for a lap. All I wanted was to be hugged by Him.
This is Isaac’s story. But it is also Juliana’s story, how she went through the storm, faced the lashes of the wind and learned to drive the boat without fearing the weather forecast. It is, above all, the story of building a relationship of trust, love and absolute surrender to God.