Edinburgh boy battling back after sepsis robbed him of fingers and toes

Jakub contracted sepsis at 18-months old and lost all fingers, toes and feeling in feet and legs. Three years on the family are trying to raise £60,000 for a life-changing operation in Poland.

At just 18-months-old Jakub Kolek was found by his mother unconscious in his cot. After rushing to Sick Kids Hospital it was confirmed that the tiny lad had sepsis – and within three months he had lost all of his toes and most of his fingers fighting the killer illness.

Now aged four, Jakub has been left with complex mobility problems but has the opportunity to undergo a life-changing operation that will see him be able to run for the first time in his life.

But the surgery requires big cash and his close-knit family are busy trying to raise £60,000 to fund their son’s “second chance”.

Pawel, Jakub (40, Martyna (9), and Karina kolek. Picture: Lisa Ferguson

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In January 2015, when mum Karina Kolek took Jakub home from the hospital to their home in Wester Hailes, she said he was as “healthy and happy as they come”.

The first sign there was something wrong was when Karina noticed Jakub had a high temperature on the evening of October 1 2016. She said: “I noticed he had a high temperature and was keeping an eye on it, but he was a healthy and strong boy so I wasn’t too worried.”

The next morning the young mum was terrified to find her son unconscious in his cot, struggling to breathe, and along with partner Pawel, 37, the family rushed to Sick Kids Hospital.

When they arrived at the children’s hospital, Jakub was in a critical state and his heartbeat was very faint.

Pawel said: “It all happened really quickly, when we arrived he was only half breathing and he was still unconscious.

“As soon as we got into the hospital he was taken away, doctors were surrounding him and giving him injections.”

Two hours after arriving at Sick Kids the shaken parents were told their son had sepsis which Pawel said “felt like the end of the world”.

The family spent the next three months in hospital, where Jakub’s tissue cells began to die and led to finger and toe amputations.

Karina said: “While he was in hospital, his fingers went black and cold, we were told that they had died and most of them had to be cut off.

“The same thing happened to his feet and he lost all of his toes and the tissue in his feet and legs were badly damaged.”

The brave baby fought through the disease, but was left with life-changing disabilities and a weakened immune system.

Serious complications

In January 2017, the family were finally allowed to take Jakub home, and for a while family life returned to “a type of normal”.

The young mother said that Jakub was learning to play without fingers and toes and was “doing well”.

It wasn’t until Jakub first tried to walk that they realised how serious the complications with their son’s feet were.

Pawel said: “He would try and try to walk but we could see he was in pain after just a few steps.”

The family went back to doctors and were told that their son’s in-soles were not developing, and in particular his left foot was not functioning correctly because there had been a large loss of tissue from the sepsis.

Where the boy’s heel should be, the bone protrudes and this was causing further twisting of the foot.

On June 16 2018, Jakub underwent more surgery which saw surgeons scolding the bone so that he could move.

While the family were initially hopeful that this would help with their son’s mobility, one year later the bone is continuing to grow, causing severe pain when Jakub tries to walk.

Pawel said: “When we go to the playground with him and his sister, he tries to run on his feet but always falls over and gets left behind.

“He ends up in so much pain that he has to ask us to carry him, and he gets very frustrated by this as he is an active boy who wants to run.”

As Jakub grew, his disability intensified and the whole family had started to “lose hope” that their son would be able to “lead a normal life”.

The “desperate” mum and dad turned to the internet to find a solution to their son’s pain and contacted everyone they could find.

A second chance

The family were when they received a message from Dr Dror Paley, a world-leading orthopedic surgeon, specialising in limb lengthening in Florida.

He invited the family to London for a meeting where he told them about an operation not available in the UK which would lengthen Jakub’s feet and sculpt an in-sole.

Jakub’s father is hopeful that this surgery will allow the four-year-old to walk upright without pain for the first time in his short life.

He said: “When we went to the appointment in London it was the first time in a long time that I saw a chance for our son.”

But coming in at £60,095, the operation is far outwith the family’s budget and they now face the enormous task of raising the cash before the scheduled operation in April.

The family of four has set up a Gofundme page to raise the money needed for their son’s operation.

Pawel added: “We know it’s a lot to ask but we have got to try, we started the page yesterday and have been checking it every moment.”

While mum and dad try to organise finances, Jakub is busy playing with lego, working out clever ways to build without fingers and continues to try and run with his sister and friends.

To donate go to: https://www.gofundme.com/f/sqssk-help-for-jakub