Allison B.
Posted by

My hero

Allison B.
Posted by
23 Jan 2017

A tribute to my extraordinary son Jak who looked out for others right up to the end during his treatment for lymphoma.

Jak was a normal fit and healthy 14 year old up until the summer of 2014.

His hobbies were football (he was an amazing Goalie winning awards within his local team and representing his school in the County School Football team), playing the tuba in the school band, Band Camp being one of his favourite weekends of the year, and completing his Bronze Duke of Edinburgh Award which he loved every part of, especially the expedition walks and training the younger football team.

He loved spending time with friends and in particular his lovely girlfriend Hannah.

Symptoms & initial diagnosis

However in July of 2014 Jak began to feel unwell and complained of a sore throat and sore chest.

We went to the Doctors twice and the second time Jak was given antibiotics.

Jak then went to Tenerife with Hannah and her family for 2 and a half weeks and when he came back he was feeling tired all the time and became very quiet.

Then at the beginning of August he started being sick and having the runs.

After two weeks and three further trips to the doctor, Jak was admitted to St Johns hospital where they realised two of his bloods weren’t balancing, and he had pleural effusions around his lungs.

Jak was transferred as an emergency to ICU in Sick Kids after his lungs filled quite rapidly with fluid in one day.

Jak was taken to Theatre and an emergency chest drain was inserted at 3am. Jak was kept sedated thereafter.

After numerous tests and scans we were given the devastating news he had leukaemia and that he was very ill and that the next 48 hours were critical.

48 hours turned into 72 and Jak was kept in a medically induced coma for 8 days during which time he was on a kidney dialysis machine and pumps and medicines galore as all his major organs were failing.

When he awoke he still had the tube in his throat to help him breathe as his lungs still weren’t stable so we waited until it was out a few days later to tell him what was wrong, Jak using a book and pen to communicate with meantime.

When I told him what was wrong he took the news in true Jak style amazingly well and as predicted he was more worried about losing his hair than anything else!

However- shortly after I had had to deliver that awful news the doctors called me for another meeting. What they told me next literally took the every ounce of energy and breathe from my body.

Incurable, Median a year- maybe more maybe less.

Treatment & re-diagnosis 

Jak didn't respond to the chemo he’d been given for his “leukaemia” in the first week, so they had done more tests. They discovered he actually had a very rare and extremely aggressive form of lymphoma- Gama Delta T-Cell Lymphoma.

His best chance was to be given and hopefully respond to a potent cocktail of chemo basically “made up” on advice from experts around the world, and then a stem-cell transplant to give him as long as they could.

There was no protocol for this type of cancer- nothing had ever worked longterm with the few cases studied worldwide and because of the weakness in his chest they were very limited with what drugs they could use without risking killing him with chemo!

After 2 and a half weeks Jak was moved from ICU down into TCT Room in Ward 2.

His next 14 weeks within the hospital was filled with many ups and downs and a couple of times the crash trolley was brought into his room during treatment- it being so strong it was killing all the good cells aswell as the bad with horrific side effects.

The doctors tried their very best for my boy and managed to get the cancer cells within his bone marrow down from over 70% to under 2% (under 5% classed as “remission”).


Jak amazed all the doctors, nurses and medical staff with his progress and I didn’t find out until after he’d died that they actually didn’t expect him to survive past the first 4 days, but through his sheer determination and the love of those around him we got these extra, precious 5 months together.

It was an incredibly challenging time for everyone- especially for Jak who had gone from being this fit healthy young man into a bedridden teenager who had to learn to walk all over again. Mentally the emotional challenges of being in isolation was immensely taxing.

Visitors were limited and if they had a cold- sore or even as much as a whiff of a cold or bug that was it- they couldn’t come in for fear of the patient catching something which could literally kill them.

Helping others & raising awareness

Jaks attitude towards his illness and diagnosis/prognosis was just phenomenal. He took the news that this may be tricky to treat very well indeed and fought to the end. He put us fit and healthy people to shame and made us all re-evaluate our priorities.

Even when so seriously ill Jak was always worrying about others and put them before himself. Friends were coming to see him and he was more concerned about their families and the other kids on the ward than he was about himself.

Jak chose to share his story online through Facebook- Jak’s Journey- and had a regular following of approx. 800 people initially.

By the time Jak died he had and still has approx. 40,000 followers on his page- phenomenal!

People sensed something very special about him and his story and wanted to know more and find ways in which they could support him.


Jaks fundraising efforts started very early on. When he asked to shave his hair off before it fell out he wanted to raise money for SKFF. We raised over £2000. Then his school got involved and raised over £25,000 for CLIC Sargent, SKFF inspired by Jak.

He also organised a collection of duvet covers for St Johns Childrens Ward and Sick Kids ICU and Ward 2 as when we were in St Johns they were looking very tired (my Scooby Doo one was almost as old as me!).

At Children in Need Jak raised over £1000 in pledges to shave his moustache which was growing back by then as Dr Thomas didn’t like it so he challenged his followers to donate and if he got over £1000 he would shave it.

Fundraisers were held in his name and further monies were raised for SKFF, CLIC and St Johns Childrens Ward.

Legacy & Jak's Den

Then when we were dealt the devastating news that his cancer had returned with a vengeance and there was nothing more they could do Jak set about raising funds for Bloodwise (still Leukaemia and Lymphoma Research back then) and raised over £60,000 in the days prior to and following his death.

When Jak knew there was nothing more they could do for him he set about making a wishlist of things he felt were “missing.” One of these was a Neutropenic Café for young cancer patients and their families- where people can go and eat in a sterile clean environment without fear of infection. He loved his takeaways and meals out.

Another was setting up a sibling support group for teenagers as although there was plenty support for younger siblings we couldn’t find anything suitable for his sister Aimie or Hannah his girlfriend.

Jak also wanted a purpose built building - Jak’s Den - where all these things plus further support groups, Expressive Arts and Sports classes and loud and quiet rooms could be for those going through what he had to. So we set up the Charity Team Jak Foundation and within 2 weeks of Jak dying we had £12,000.

By April we had our OSCR registration to date we have raised almost £300,000 through fundraising alone. ALL because of my beautiful inspirational boy.

Finishing what Jak started

Jak was a polite courteous thoughtful amazing outstanding young man who didn’t deserve any of this to happen.

He deserved to grow up and live the full life he was on course to achieve.

I miss him terribly and would do anything to have him back. But sadly that’s not to be.

Instead we need to honour his memory by carrying out his wishes and his legacy through Team Jak Foundation and help others in his name.

Jak won a number of prestigious awards since his death - The Kerry MacGregor Award for Overcoming Adversity from his School, The Young Hero Award and the Young Scot Award and The Local Hero Award. Forth One Local Hero Award and The Broons Child of Courage and Family of the Year Award.

We will never stop supporting Bloodwise until there is a cure for children's blood cancer of every type.

Jak is and always will be my hero.



Hi Allison, Thank you so much for sharing this. I can only imagine how much of a devastating shock this must have all been. It's so clear that Jak was an incredibly thoughtful and kind young man, and I am so very sorry that you have all had to go through this. The effort that Jak went to to help others and raise money, is absolutely remarkable, and so immensely thoughtful. Thank you so much for all that you are doing to help others affected by blood cancer. Warm regards, Alice

Esther Dark

Hi Allison, 

Thank you for being so honest and posting this incredibly moving blog. Jak's determination and strength is really inspiring. It's incredible that you're raising money and awarness of charities like Bloodwise. Thank you for everything you do.