Crook father making every second count with ill baby son

The Northern Echo: Daniel Johnson with his son Jacob. Picture by Keith Taylor Daniel Johnson with his son Jacob. Picture by Keith Taylor

THE family of a baby boy with a rare and aggressive cancer have held a big party to celebrate his first birthday.

Jacob Johnson was diagnosed with a malignant rhabdoid tumour (MRT) in July last year, aged just six months old, after a lump the size of a drink’s can appeared on his head.

He underwent an operation to have the lump removed and an intensive course of chemotherapy, but tumours returned and have now spread to his lungs.

His father, Daniel Johnson said his life was turned upside down by the diagnosis, and he has given up work as a plasterer to spend weeks at a time in the Great North Children’s Hospital in Newcastle.

Mr Johnson has now decided to make every minute of his son's life count.

The 24-year-old, from Crook, County Durham, said: “They have thrown everything they can at beating these tumours but they keep coming back.

“I’ve been told he only has months to live, so rather than see him in hospital I brought him home to try and create as many memories as we can.

“It’s been terrible, I never expected something like this could happen.

“But I’ll worry about it and feel sad tomorrow, if I do it today then I am just wasting the little time I have with my son.

“We will keep going and make the most of him while he is here.”

Mr Johnson threw a big birthday party for Jacob, who turned one on Friday (January 24), at the Spectrum Leisure Centre in Willington this weekend.

He is also planning a trip to Donna’s Dreamhouse, a charity in Blackpool that offers holidays for sick children and their families.

Mr Johnson is hoping a new drugs trial in London may offer some hope of giving him a little longer with his son, but knows that there is no cure for his illness.

He said: “I want to thank everybody who has supported us, I would not have been able to get through this without my family.”

Less than 50 cases of MRT in children have been found in the world since 1979, with only 20 per cent of those surviving.

Mr Johnson has already raised more than £6,500 for the Newcastle ward where Jacob was treated, and will hold a children’s fancy dress party followed by a fundraising night featuring a Full Monty show at Crook Working Men’s Club on Saturday, March 1.

The free children’s party will run from 4.30pm to 6.30pm, with the evening show starting at 7pm and tickets costing £5.

Comments (7)

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9:19pm Sun 26 Jan 14

Hunty1 says...

Very humbling to see a parent face such tradegy with bravery and clarity of mind.. Enjoy your time together x
Very humbling to see a parent face such tradegy with bravery and clarity of mind.. Enjoy your time together x Hunty1
  • Score: 23

12:38pm Mon 27 Jan 14

hasanopinion says...

An absolute inspiration to anyone facing tough times, only in tough times do we truly know how strong we are. god love Jacob and his family.
An absolute inspiration to anyone facing tough times, only in tough times do we truly know how strong we are. god love Jacob and his family. hasanopinion
  • Score: 11

2:00pm Mon 27 Jan 14

kimmy112 says...

beautiful little man... was humbled to meet Jacob a cpl of weeks ago and he never stop smiling...
beautiful little man... was humbled to meet Jacob a cpl of weeks ago and he never stop smiling... kimmy112
  • Score: 8

4:57pm Mon 27 Jan 14

NO EINSTEIN says...

Perhaps if this government spent 3 Billion on a cure for cancer, instead of 3 Billion on a new Nuclear submarine project, this poor little lad would not have been in the news today, s---t I wish we would get our priority's right in this country.....
Perhaps if this government spent 3 Billion on a cure for cancer, instead of 3 Billion on a new Nuclear submarine project, this poor little lad would not have been in the news today, s---t I wish we would get our priority's right in this country..... NO EINSTEIN
  • Score: 14

1:51am Tue 28 Jan 14

pandorica says...

Oh how I am sat crying here for you all. What a beautiful little boy, my god this poor bairn. I don't have any words, I just do not know what to say. Why at the beginning of his little life does this happen? I just am glad he is surrounded by such a loving family who even through this heartbreak have put their all into making sure Jacob fulfils as much as he can in the time left. Sending you all my love and kisses little man. Keep smiling. xxx
Oh how I am sat crying here for you all. What a beautiful little boy, my god this poor bairn. I don't have any words, I just do not know what to say. Why at the beginning of his little life does this happen? I just am glad he is surrounded by such a loving family who even through this heartbreak have put their all into making sure Jacob fulfils as much as he can in the time left. Sending you all my love and kisses little man. Keep smiling. xxx pandorica
  • Score: 3

4:06pm Tue 28 Jan 14

maur1 says...

awwww good luck to you all a lovely looking lad and caring dad , make what time he has special
awwww good luck to you all a lovely looking lad and caring dad , make what time he has special maur1
  • Score: 2

10:00pm Thu 6 Feb 14

Who'sBoffed? says...

So sorry about your son. I remember meeting him at soft play recently. His Mum, I think, told me he'd had a tumour, he seemed so happy, I had no idea he was so poorly. Jacob is blessed to have such a caring Dad and family. My heart goes out to you, enjoy every minute you have with him.
So sorry about your son. I remember meeting him at soft play recently. His Mum, I think, told me he'd had a tumour, he seemed so happy, I had no idea he was so poorly. Jacob is blessed to have such a caring Dad and family. My heart goes out to you, enjoy every minute you have with him. Who'sBoffed?
  • Score: 0

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