A mum whose daughter’s head kept growing to an abnormal size due to a rare condition has revealed the cruel names people call her – but thinks she’s still beautiful.
When Adalgisa Soares Alves fell pregnant with her first child, Graziely, she immediately knew something wasn’t quite right as she struggled with intense belly pain.
Soon, medics informed the mum that her baby had hydrocephalus, a build-up of fluid on the brain causing pressure and subsequent damage to the skull, with them estimating she would only live for three months. Incredibly, Graziely is now 29.
Now, Adalgisa is sharing her daughter’s daily battle with the condition, which saw her being dubbed a “giant baby” at birth.
“I don’t think it’s cruel because ‘baby’ is an affectionate word, but when they call out her ‘big head’ I feel sad,” the mum told NeedToKnow.co.uk.
“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.”
At eight months pregnant, the Brazilian native recalls struggling to get out of bed, where an ultrasound was performed and a few hours later, her daughter’s diagnosis was confirmed.
Due to the 29-year-old’s condition, her head was born larger than average for a newborn and continued to grow long after birth. She also needed multiple surgeries.
Adalgisa claims that nothing could have been done before or immediately after she was born and now, she’s unable to walk, speak and sadly, has recently lost her eyesight.
“Every day I take care of her, bathe her and feed her with all my love,” she said. “I’m dedicated to Graziely and it makes me happy to see her well cared for, from me and all of our family.
“Nephews, cousins, aunties and many more family members love to come and see her and care for her. 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.”
Financially, the family rely on BPC payments, a non-contributory pension scheme available to those unable to work due to disability.
Graziely goes through a pack of nappies per day
Typically, their day begins at 7am with a homemade papaya smoothie and a bath, followed by soup and a quick clean at 11am and again at 6pm.
Per month, Graziely uses 30 packs of nappies, costing 75 reais (A$22.74) per pack, with around 2,250 reais (A$382.30) being spent per month on other essentials.
In a bid to share their daily life and raise awareness, Adalgisa updates their followers on Instagram with pictures and videos of Graziely.
In one clip, which has racked up over 113,000 views, Graziely is shown having a bottle being fed to her.
Users flocked to the comments to share their words of support.
“God bless you so much,” one person said.
“Ms. Adalgisa, you are an angel, beautiful soul, may god bless you always,” someone else added.
Others, however, weren’t so kind with their words.
“I’m sorry this couldn’t be me I couldn’t see my child like this everyday,” one person added.
“Euthanasia,” said someone else.
Adalgisa, who is also mum to Elanny, 28 and Bruna, 26, said she hopes her first born will live for “many years”.
“She transmits positive energy and I feel a peace that overflows when someone visits her,” she said.
“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.”
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