Main fundraiser photo

will to live

Donation protected
Tuffel was given a week to live when he was born… Now, six years later, he still fights to survive against all odds!

My son lost his bowel at birth. It’s a Life Limiting Condition meaning life expectancy is unknown. 

He is and will always be completely dependent on a line going to his heart, where a machine feeds him all the nutrition, he needs each day.

In the beginning we were told if he was to live, he would need to be connected to this machine twenty-four hours a day and be in hospital for at least the first four years of his life.

The weight of this reality nearly crushed all hopes we had for him to live and grow to adulthood, to be a child and do the things children do. To play in the park, go for a swim or make friends.

He has already gone through so many operations and there are so many dangers ahead that we are in a constant state of alert.

A simple thing like irritation around the skin of his line has in the past led him to scratch and pull out his line whilst he sleeps, which is extremely dangerous.

Tuffel has four access points for his line via arteries. If we lose them when lines are pulled out, they can collapse, and if they do, we can’t access him... and it would become very difficult to keep him alive.  His life-quality would become unbearable. 



We also have the problem of bacteria getting easily in to his blood via the line and spreading, which can cause a life-threatening infection. This mostly happens at night and it can kill him within 2-8 hours if not monitored.

Night-care is a critical part of his routine otherwise he could fall into a coma if his blood sugar drops too low, he could get an infection in the line, or even bleed out.

Simply put, night care is critical to his survival!

Tuffel has painfully endured around 20 operations so far. He’s sick up to 5 times a night and suffers stomach pain and cramps. 

He’s not able to get wet or play normally with other children because of risk of infection, and he puts on a brave face when the nurses struggle to get his cannulas in when he’s dehydrated.... 

Despite it all he is a very happy boy and he loves life, in fact, in the short time Tuffel is away from his machine he can live a good life but with certain limitations.



You certainly wouldn’t know it if you met him in the street. He’s just a beautiful and sometimes cheeky little boy who needs our help, now more than ever!

When I was faced with the very real prospect of seeing my son die slowly and at the same time to be told there is no solution, I set out on a journey to change medical science and create one.

I found stem cell research leaders from all over the world and got them to collaborate on a solution to his condition.

There were no funds for this kind of research but together with my family, we managed to raise close to £7 million over 3 years and they are now working to create the first line of organs grown from our own stem cells. You can read more here  about the progress we are making.

This is cutting edge technology that opens up an entirely new treatment for people with organ failure. We have come so far, and we are now so close.

But at the same time, NHS Oxleays have denied my son the critical night care he needs right now, which places him in immediate danger. As a result, Tuffel will suffer more surgeries and life-threatening incidents that will involve a lot of physical pain and discomfort, and even more risk.

What they are doing is nothing short of openly breaking the law, and with time already against us leaves us no choice but to take his case to high court and fight for Tuffel’s life

Before my son I never thought of myself as paternal, but I have grown. I look at him and my chest aches with pride because despite everything he has endured, all the pain and discomfort and sleepless nights… when I feel weak, he somehow finds the strength to carry me through.

He needs more help than we are able to give.

Please help and support us in raising money for the high court case to protect Tuffel’s right to get the care he needs.

All money raised will go towards our fight at the high court to ensure he can be safe and healthy for a long fight ahead, and we can make it easier for other children to get their medical needs meet.

If we raise more than the set goal then we will spend the rest on a team to help with grant applications so we can finish the innovative medical research.

With your help it’s possible to win this fight and complete what we started.

We have nothing but hope for the future, please help us keep it alive.

If we all give a little, there’s nothing we can’t achieve! 

You can also help by sharing this page on your social media, and with your friends and family and ask them to share it too.

You can mention it to your local media or if you know bloggers get them to post about it.

We need to spread the word to ensure a better world for Tuffel and everyone with organ failure.

If I have learned anything from this it’s that the impossible is possible and together, we can change the world.

Donate now to help save Tuffel and other like him.
Donate

Donations 

  • Matthew Dwyer
    • £20 
    • 5 yrs
Donate

Organiser

Thomas Westenholz
Organiser

Your easy, powerful and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help straight to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.