Miracle baby defies odds after doctors warned she might not survive
- Credit: Contributed
A miraculous four year old continues to beat the odds after doctors warned she might not make it even before she was born.
But Aria Beales' life-threatening conditions mean her parents are "constantly on edge" worrying about her health.
The smiling youngster was born at the Norfolk and Norwich University Hospital in March 2017 but was diagnosed with a serious brain condition following a 32-week anti-natal scan.
Her parents were told by hospital staff that they should consider a termination as her life quality could be low as a result of her conditions.
But the child, whose third and most recent brain surgery was in March 2018, continues to surprise both her family and doctors.
Aria's mum Jenny Madden, 32, said: "We were told she should have been a stillbirth or a miscarriage so the fact she has managed to push through is quite impressive.
"She needs monitoring very closely for seizures or signs of shunt failure, the signs of which are vague and similar to a stomach bug, which would need to be acted upon immediately as these could be life threatening.
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"I have lost track of how many times the poor girl has had to be put to sleep for operations or had CT scans."
Aria was diagnosed with congenital toxoplasmosis, a disease which occurs in foetuses affected by a parasite in the womb.
The cause of the parasite still baffles medical experts.
She was found to have severe ventriculomegaly, in which the ventricles of the brain are enlarged due to the pressure of the cerebro-spinal fluid within them.
At eight months Aria was diagnosed with epilepsy and had two seizures, with one lasting more than 40 minutes.
Her longest seizure to date has been more than two hours.
Miss Madden said: "Aria has been on numerous medication combinations to help treat this and is now considered drug resistant. She currently has two medications and is on the ketogenic diet to help with seizure control."
The mother is a full-time carer who has chronic back pain while her partner Michael Beales is also unable to work as he is registered disabled after a bleeding disorder left long-term damage in his leg.
Despite not being able to take part physically, he still runs martial arts classes in Norwich at the Black Belt Academy in Bull Close.
The couple are currently trying to move from their council home in Sutton near Stalham because they can no longer lift Aria up the stairs.
They have had to set up a makeshift bedroom for the child in her living room instead.
Miss Madden added: "I'm not going to lie it is an exhausting lifestyle. Myself and my partner have a background in disabilities so we know how to navigate that but it literally is non-stop.
"Nobody believes it until they meet Aria. You do constantly have to judge whether it was a basic illness or life threatening.
"She currently requires support in all daily activities. Her limited communication and understanding can lead to challenging behaviours such as self harm, hitting, biting, pinching and head butting.
"Aria has significant sensory needs and in particular sensory seeking. She is constantly moving and finds it difficult to stay still.
"These behaviours can be excessive and pose a risk to her and others. She has very little response to pain or feeling unwell and she doesn’t recognise hunger, thirst or tiredness."
Aria broke her ankle in August 2020 but it took four weeks for anyone to notice she had done it as she was showing no signs of pain.
She spent 16 days in hospital between the Norfolk and Norwich and Addenbrooke's in Cambridge where she was only showing neurological symptoms such as tiredness and loss of appetite.
An x-ray eventually revealed the damage to her ankle.
A fundraising page has been set up to help the family, who have been on the housing list for more than four years, to move to a more suitable home.
This can be found here.