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Dover baby Brodie Arbon-Davis with swollen legs and feet now walking and defying odds against rare PIK3CA mutation

By Hannah Van De Peer

A little boy with a rare condition which caused his feet to permanently fill up with fluid is standing and toddling along – despite being told he'd never be able to walk.

One-year-old Brodie Arbon-Davis, from Dover, was born with the PIK3CA mutation – leaving him with birth defects, including a blood vessel malformation on the bottom half of his body, as well as cysts on his kidneys and thickened bone marrow.

This has caused his legs to permanently swell. Scans show he technically only has two toes on each foot.

Doctors warned his mum, Holly-Louise Mackie, 26, that the tot would never walk unaided or wear shoes. But despite the odds, Brodie has been able to pull himself up and toddle along while holding on to a walker and furniture.

Full-time mum Holly-Louise says her son is “smiley and thriving”, and loves to make people laugh, adding: “Brodie was born this way and it’s a blessing in disguise.

"He can’t do the stuff other kids are doing but he’s thriving anyway. He’s a strong little fighter.

Brodie Arbon-Davis was born with a rare genetic defect that causes his legs to swell up. Picture: SWNS
Brodie Arbon-Davis was born with a rare genetic defect that causes his legs to swell up. Picture: SWNS
Brodie's mum says the tot is “smiley and thriving” against the odds. Picture: SWNS
Brodie's mum says the tot is “smiley and thriving” against the odds. Picture: SWNS

"He seems to be a pusher, he’s ridiculously happy. In fact, the only time I don’t see him smiling is when he’s in pain.”

Brodie was born nine weeks prematurely, weighing 5lbs 4oz, on November 26, 2021, after Holly-Louise says she “coughed one day” and her “waters just broke”.

Nothing concerning had been flagged during scans while she was pregnant. She and her partner, Liam Arbon-Davis, 27, a builder, believed Brodie's premature birth would just make him “short”.

But as soon as Brodie was delivered, his parents could see there was something wrong.

She said: “I could see his legs were ridiculously swollen and purple when he was born. At first, I thought it was a port wine stain birthmark.

Brodie suffers from the PIK3CA mutation – a malformation in the blood vessels affecting the lower half of his body. Picture: SWNS
Brodie suffers from the PIK3CA mutation – a malformation in the blood vessels affecting the lower half of his body. Picture: SWNS

“He had to go through so many tests within the first month. No-one knew what was wrong with him.

“He had bloods, and they did ultrasounds on his kidneys and a skin biopsy. That was when they found the mutation.

“The PIK3CA mutation is basically a malformation in the blood vessels affecting the lower half of his body.

“It wasn’t hereditary – neither myself or my partner carried it. It’s what they call a mosaic anomaly – just a freak accident, basically.

“It was heart-wrenching – but I loved him to pieces as soon as I first saw him.

Holly-Louise Mackie and Liam Arbon-Davis with baby Brodie. Picture: SWNS
Holly-Louise Mackie and Liam Arbon-Davis with baby Brodie. Picture: SWNS

“He spent a month in the NICU. Doctors found he had deformities on each foot, a build-up of fluid in both legs, cysts on his kidneys and a bone marrow thickening from the waist down.

“His legs are in the 0.4th percentile, which means his bone quality is very low. He’ll never be able to walk unaided.”

Brodie was allowed home from the NICU on December 23, 2021.

But he has regular blood tests in case more of his organs are affected by the mutation - and he has constant access to a ward in case he’s ever ill or in pain.

He experiences the most pain during the night when, particularly after a long day, his legs can feel “achey”.

Brodie loves playing with his younger brother, 10-month-old Cade. Picture: SWNS
Brodie loves playing with his younger brother, 10-month-old Cade. Picture: SWNS

The pain can often get so bad that regular painkillers like Calpol “won’t touch it”.

Holly-Louise has been prescribed Oramorph, a type of liquid morphine, for Brodie.

His birth defects mean he’ll never be able to wear shoes and he currently needs to wear adult-sized socks at just one-year-old.

Holly-Louise said: “I’m never going to be able to buy him a pair of shoes for nursery.

“I can’t get him child clothes or socks – his legs and feet simply do not go into them.

“I don’t want him to get bullied and we try and encourage him to love himself. I tell him: ‘You’re you. Love who you are.’

“I’m not afraid to take him out and show him off to the world. He’s my little boy and I think he’s absolutely beautiful.”

Despite his conditions, Brodie is a “happy little boy”.

Holly-Louise says he loves playing with his younger brother, 10-month-old Cade, and he has a knack for making his family members laugh.

“He’s just an all-round happy little boy,” she added.

“Even if he’s sad, he won’t cry for long.

“Brodie has a really cute little bond with Cade. He strokes his brother’s head, sometimes even pretends to feed him."

Cade was born less than a year after Brodie, on September 20, 2022, weighing 4lbs 11oz. He was six weeks premature and born with just one kidney.

Even though both her sons were born with severe medical issues just 10 months apart, Holly-Louise and Liam have managed to stay positive.

She said: “I just crack on with it. I’ve had two traumatic births, but I don’t focus much on that.

“I get through it with laughter.

“We just try and turn the negatives into positives.”

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