Baby born with expanding head won't stop growing due to rare condition

18 May 2024 , 06:38

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Adalgisa is sharing her daughter's daily battle with the condition (Image: Jam Press/@adalgisasoaresalves)

A mum is speaking out against online bullies who mock her daughter for her rare medical condition.

When Adalgisa Soares Alves was pregnant with her first child, Graziely, she sensed something was wrong due to severe stomach pain. Doctors diagnosed Graziely with hydrocephalus, a condition where fluid accumulates in the brain, causing the head to enlarge. They predicted she might not live past three months in Brazil. Despite the challenges, Adalgisa, now 48 and a mother of three, is sharing Graziely's story in which she was labelled a "giant baby" due to her condition.

She said: “I don't think it's cruel because 'baby' is an affectionate word, but when they call out her 'big head' I feel sad because then that is just being cruel. But the important thing is that me, and all our family and friends, love Graziely the way she is."

Graziely had hydrocephalus, a build-up of fluid on the brain (Jam Press/@adalgisasoaresalves)

Adalgisa explains that there was nothing that could have been done immediately after Graziely was born. Now, Graziely faces challenges—she cannot walk, or speak, and has recently lost her eyesight. Despite these difficulties, Adalgisa cares for her daughter every day with love.

“Nephews, cousins, aunties and many more family members love to come and see her and care for her”, she said. "I don't work, I just take care of her — I’m happy to take care of her and it is rewarding when I see her smile. I never lose hope because I am a woman of great faith and I always put God above everything — I pray a lot every day.”

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Adalgisa shares updates of her daily life with her followers on Instagram (Jam Press/@adalgisasoaresalves)

Adalgisa shares pictures and videos of her daily life with her followers on Instagram, shedding light on the moments she spends with her daughter Graziely. Recently, she posted a heartwarming video of Graziely being fed with a spoon, alongside a plea for help to raise funds for a better room for her daughter.

With two other grown-up children, Elanny and Bruna, Adalgisa expresses her unwavering hope for Graziely to have a long life. She describes Graziely as a source of positive energy, bringing peace to anyone who visits her. She said: “I always hope that she will live [for] many years.

"She transmits positive energy and I feel a peace that overflows when someone visits her. I will always give her the best because she was born from my womb. She was very much loved and desired inside my belly and I will love her until the last day of her life.”

Florence Freeman