A toddler with an extremely rare illness who had a bone marrow transplant from his six-year-old sister has rung the ‘end of treatment’ bell to celebrate. 

Doctors gave little Jakob Frost, who has spent more than half his life in hospital, just a 30 per cent chance of surviving the procedure but he defied the odds.

Now the 18-month-old is back at home near Durham with sister Freya and parents Nicola and Mark.  

Nicola describes Jakob, who was diagnosed with an extremely rare genetic disorder, MIRAGE, when he was six months old, and Freya as inspirational.  

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She said: “Jakob’s a very complex little man but he’s so happy.

“He keeps smiling at me. He’s alert, he’s interacting, he knows what’s going on, he plays, he sits up and he knows who people are.”  

Jakob’s bone marrow did not develop properly and his family are hoping that the transplant will strengthen his immunity and make him less reliant on blood transfusions. 

Currently tube fed, he has trouble swallowing and has a shunt in his head after having fluid on the brain. He also has some development delay. 

It was Jakob’s need for regular blood transfusions that persuaded them to opt for the transplant. 

When Freya learnt she was a donor match she embraced the chance to help her brother.   

Nicola said: “If we didn’t do it he would be reliant on blood transfusions and that’s not much of a life.   

“We always said we’d never force Freya to do it. She was with us when she found out she was a match and we told her it was her choice and she was adamant she was going to help Jakob.

“She was amazing and just took it in her stride. Now she wants to be a blood doctor to help people like Jakob.

“She’s intrigued, she knows about the different bloods. Freya and Jakob have a really special bond. She says he’s got a piece of her inside him.”

Jakob was admitted to the transplant ward on March 28 to start chemotherapy to cancel out the old bone marrow ahead of his transplant on April 6.

The family had to isolate for two weeks prior and Freya was admitted on April 5 for bloods before undergoing a two-hour donor procedure under general anaesthetic.  

She stayed on the same ward as her brother for 24 hours and watched him receive her bone marrow, which is similar to a blood transfusion, on Facetime.  

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Due to complications, Jakob remained on the isolation ward for 16 weeks before ringing the bell on July 14. 

Nicola said they had mixed emotions when Jakob rang the bell.  

She said: “It was great to know Jakob had made it through the complexities of transplant but we also knew his journey was not complete.  

“It was a very emotional day, especially as his consultant had given 30 per cent chance of him making it home from the transplant and the pressure it puts on such a small person.” 

Jakob was cared for at The Great North Children’s Hospital in Newcastle, and the family has been supported by the Rainbow Trust Children’s Charity.

Support worker Jen visited every week to give Nicola some much-needed respite as Jakob could not be left alone.

Nicola would stay with him from Sunday until Friday, meaning she was also away from Freya, with dad Mark taking over at weekends.        

Nicola said: “Jen was amazing. She would come in for two hours a week and I would use that time for my sanity so I wasn’t so isolated.

“Without her I would have struggled a lot more. Sometimes I’d had very little sleep and I needed that time for myself or my friends.” 

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The family is now appealing for people to donate to Rainbow Trust so more families caring for a life-threatened child can be supported.   

Nicola added: “Rainbow Trust has been fab. Sometimes you just need to have a cuppa and a nice biscuit.”

To find out more about the Rainbow Trust call 01372-220-083.