When newborn Freddie Marrow kept throwing up his milk, his parents assumed he had a milk allergy.
It turned out this was a symptom of an incurable condition that would stunt his development, making him ‘forever three months old’.
In January 2019, Freddie was diagnosed with Pontocerebellar hypoplasia type 2A, a rare genetic disorder that affects the development of the brain.
He is unable to walk or talk and is not expected to live past 12 years old.
Freddie’s parents, Monika, 30, and Tony, 28, plan to cherish every moment of their youngest son’s limited life. They’ve found that he loves being in water, so give him as much time as they can splashing around.
Heartbroken mum tells how her son’s ‘milk allergy’ was actually an incurable condition that made him “forever three months old”
Monika, of Grays, Essex, said: ‘He’s our little water baby – once he’s in the water we just can’t get him out.
‘It melts my heart seeing him so happy. Every smile we get is such a bonus, it makes everything seem worth it.
‘Freddie will forever be physically and mentally a three-month-old baby.
‘He’ll never make any of the milestones he was supposed to, and the condition has caused him to be so stiff, he’ll never be able to stand or walk and needs constant support.
‘He’s in a lot of pain, and we need to keep a constant eye on him – but he absolutely loves swimming, it’s the only thing that can properly relax him.’
When Monika – who moved to the UK from Poland eight years ago and married Tony in 2013 – was pregnant, there were no signs that anything was wrong with her child.
The months spent investigating their son’s issues were incredibly tough.
‘It’s heartbreaking to look back at how happy we were – and how it was all about to be ripped away,’ said Monika.
‘We’ve had to allow ourselves to grieve for the future Freddie won’t have. I’ve had to grieve for the plans I made in my head – to see him grow up alongside his brother. For the lovely family outings and holidays we will never have.
‘We’ve come to realise that it’s so important to live for now and make and cherish as many memories as we can.
‘When he was born the circumference of his head was really small.
“Having a small head can mean absolutely nothing – but in our case it did, we just didn’t know it at the time.
‘Because Freddie was our second son, we already knew how newborns behaved – and something about him was just off.
‘He’d get the jitters, wouldn’t take milk and if he did, he’d just throw it back up.
‘When Frankie was little, he was alert and engaged – but Freddie would just stare through us and he wouldn’t appear to acknowledge anything.’
By the time Freddie was 12 weeks old, Monika knew something wasn’t quite right, but worried she was overreacting or struggling with postpartum depression.
To deal with their son’s vomiting, the couple swapped milk for different types of formula, but things didn’t improve.
In October 2017 they saw a paediatrician, who was immediately concerned by the small size of Freddie’s head.
Monika remembers: ‘She instantly diagnosed him with microcephaly – which basically means small head and can insinuate a small brain too, resulting in anything from mild to severe mental delay.
‘After hearing that, the appointment passed in a haze. We’d gone to the paediatrician hoping to find a solution to his acid reflux and had left thinking something was seriously wrong with our baby.’
Freddie was then referred to the child development team at Thurrock Community Hospital, Essex, in January 2018, and a further MRI scan confirmed that his cerebellum – the part of the brain that receives information from the sensory systems and regulates movement – was 50% smaller than it should have been.
Genetic testing revealed he had Pontocerebellar hypoplasia type 2A.
Now, a year on from Freddie’s diagnosis, Monika and the family are still struggling to cope with what the condition will mean for the little boy’s life.
Monika, who is Freddie’s full-time carer, said: ‘With Freddie it’s quite hard to do anything. Between me and Tony we try to make sure we have enough time to take care of him, to be parents to Frankie, tidy the house, do the washing and prepare dinner – but it’s not easy.
‘One of us needs to be with Freddie all the time, because he needs to be held constantly.
‘If he’s bent, he’s in pain, and if he’s lying down, we need to be careful because of his reflux.’
Freddie’s life has been made a little easier thanks to a Stabilo Chilli Bean Seat, provided by Newlife – the Charity for Disabled Children.
Newlife – the Charity for Disabled Children predicts that over one million children in the UK are disabled or terminally ill. To ensure that disabled children like Freddie are able to live the best life possible, in the past year alone, Newlife has provided over 1,200 families in crisis with equipment, costing over £1,100,000.
‘For Freddie, who is constantly in pain and not able to sit down by himself, the chair moulds around him so he’s comfortable,’ Monika said.
‘Rather than constantly having him on my lap it allows me to have face to face time with him so I’m on the same level as him and it’s the chance to interact and enjoy playing with Freddie.’
Despite the daily difficulties the family faces, Monika says it is all worth it when they see their youngest boy smile.
‘He’s so smiley whenever someone is interacting with him,’ she said.
‘He quite enjoys getting lots of attention, especially from his brother – Frankie is his favourite person in the world.’
‘Because he can’t always play, Freddie gets lots of pampering sessions, too. We give him baby head massages, blow-drys and he gets his nails filed.
‘Having hydrotherapy at least twice a month has made a real difference to Freddie’s life.
‘When he’s in the water he’s so carefree. He gets a rubber ring and just floats about for an hour.
‘They play songs at the pool and there are bubbles, so it’s like being in a giant bath.
‘I’ve learnt that no matter how hard it is, or how impossible things seem, you should never give up.
‘It’s important to continue to make memories and to cherish every moment we have.
‘Even though he won’t have the future to look forward to, it’s important we live for now and enjoy the time we spend with him each and every day.’
Are you raising a child with a rare health condition? Get in touch to share your story by emailing MetroLifestyleTeam@Metro.co.uk.
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source https://metro.co.uk/2020/01/03/boys-milk-allergy-actually-incurable-condition-makes-forever-three-months-old-11994222/
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