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.
Now, the mum-of-three, aged 48, 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, as well as 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.
She said: “Every day I take care of her, bathe her and feed her with all my love.
“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.
“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.”
Financially, the family rely on BPC payments, a non-contributory pension scheme available to those unable to work due to disability.
Claimants must also have a family income of less than 25% of the minimum wage in order to be eligible.
Typically, their day begins at 7 am with a homemade papaya smoothie and a bath, followed by soup and a quick clean at 11 am and again at 6 pm.
Per month, Graziely uses 30 packs of nappies, costing 75 reais (£12.20) per pack, with around 2,250 reais (£366) being spent per month on the essential.
In a bid to share their daily life, and raise awareness, Adalgisa updates their followers on Instagram (@adalgisasoaresalves) with pictures and videos of Graziely.
In one clip, which has racked up over 113,414 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.
Someone else added: “Ms. Adalgisa, you are an angel, beautiful soul, may god bless you always.”
“This lady is an awesome mum,” Sarah said.
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, added: “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.”
