Lightning strikes twice - rare illness hits family

Australian doctors were unable to provide an acceptable solution so Brayden’s mother Rebecca (Beck) Brzezowski sent his scans to America after reading about a surgeon in Connecticut who was having success in treating the condition.

By the time the family received word from the surgeon – Richard Hsu - that confirmed the diagnosis, Brayden was practically bed ridden, in a wheelchair and was being fed exclusively through a tube.

MALS is a condition that occurs when a ligament under the diaphragm compresses the artery connected to the stomach, pancreas and digestive system. Damage to the surrounding nerves causes excruciating pain.

Due to the ligament’s proximity to the aorta and the rarity of the condition, Beck said most surgeons were cautious to perform the surgery to correct it.

However, she said Dr Hsu had pioneered a surgical technique that was achieving a more than 90 per cent success rate for MALS sufferers.

The issue facing their family was $100,000 needed to be raised for the surgery, hospital fees and transport to and from the United States. Family and friends rallied around Brayden and set themselves the monumental task of raising the funds.

They held sausage sizzles, trivia nights, raffles, a bush dance and an auction.

The family was overwhelmed by the support they received from both the Nyora and Ainsdale (Beck’s home town) communities and they were able to raise the required money.

Brayden underwent successful surgery on March 20 at a hospital in Connecticut.

He now has no pain or nausea, can eat like any teenager and after missing almost three years of school is attending TAFE.

Unfortunately, after what should have been a happy ending, this story has another chapter.

In the months leading up to Brayden’s surgery, his younger sister Ashleigh, 12, began experiencing very similar symptoms to her older brother.

After months in and out of hospital and countless doctors’ visits Beck kept asking if Ashleigh could potentially have MALS too.

So rare is the condition, specialists discounted the possibility that “lightning could strike twice” in the same family and assured Beck that Ashleigh’s condition must be something different.

As the family made arrangements to leave for Brayden’s surgery Ashleigh became unwell and was again admitted to hospital.

Beck demanded a CT scan be performed and the result came back confirming the most unlikely of news – Ashleigh also had MALS.

Beck describes this period as seemingly impossible. “We had to leave Ashleigh behind while we set off to have Brayden cured. The cost of the operation and the lead time made it impossible for Ashleigh to have the operation at the same time.”

Also, at this point Brayden was too fragile to postpone his operation so the family had to go through with their travel plans. “As a mum it was one of the most heart-breaking decisions to make” Beck said.

While Brayden is now thriving, the family has to prepare for their next battle. Ashleigh is still unwell, in pain and dealing with nausea around the clock. Should her condition progress the same way as Brayden, it is likely her condition will deteriorate to the point she will need the same life changing surgery.

“We were so grateful to be able to raise the money for Brayden in the first place. To do it all again seems unthinkable.”

As Dr Hsu’s technique becomes more well known, wait times are increasing so the family are readying themselves for another round of fundraising in the likely event they need to do it all again.

People who would like to donate can visit the family’s GoFundMe page – Ashleigh’s Fight againstALS.(https://www.gofundme.com/ashleigh039s-fight-against-mals) You can like the Facebook page - Fight against MALS (https://www.facebook.com/fightagainstmals/), where there will be updates about upcoming fundraising events and the progress of Brayden and Ashleigh.