By Mollie Mansfield
Selfless parents are exposing their dying son to a trial drug, which won’t save him, in a bid to save thousands of other children in the future.
Blaize, 42, and Emily, 37, Feduchin-Pate were told just weeks ago that their four-year-old was dying from a rare high grade brain tumour, diffuse intrinsic potine gliomas, and has just nine months left to live.
However, despite their heartbreak, the couple have decided to subject their son, Atticus, to a trial drug in a bid to save other children in the future.
A week before his diagnosis, Atticus was increasingly clumsy, struggling to balance and falling from his bike – which, alongside finding a 10 pence-piece sized lump on his head, prompted his parents to go to visit the doctors.
But despite their son only having a limited life-span, Blaize and Emily are hoping to raise as much awareness as possible about their son’s rare condition and hopefully prevent this from killing others in the future.
Blaize, from Whitchurch, Hampshire, said: “We know the experimental drug won’t save him, but by him taking it they can monitor his progress for the future.
“We knew we had to do whatever we could to save other kids – and if giving Atticus a trial drug is the way to do that, then that’s what we’re going to do.
“Now our only hope is to give him the best of the life he has remaining, and to hopefully save other children in the future.
“We are dreading the day that he passes, but we’ll find solace knowing that he has helped others in the future.”
Just five days before he was diagnosed, Blaize, a stay-at-home father, realised that his son was acting differently.
He said: “On the week leading up to his diagnosis we noticed that Atticus was being really clumsy, but we just thought he was being a four-year-old!
“He would fall off of his bike and not pay attention when people spoke to him, and even when we saw the bump on his head we initially thought he’d just banged it.
“We took him to see his GP, but they couldn’t find anything wrong with him and just told us to keep an eye on him.
“But when he continued to decline, we decided to call a paramedic and then Atticus was taken to the hospital to have further checks and he was given an MRI.
“The MRI showed the tumour in his head, and that’s when we realised what the ‘bump’ we had seen days before really was.
“The tumour resides in his brain stem, so cannot be removed safely by surgery.
“We have been told he has up to two years to live, but that is likely to be the maximum, and obviously that destroyed us.
“He is such a happy, well-spoken little boy and still doesn’t know the extent of what he’s going through – one day he can walk and the next he can’t, but he just thinks that’s how everyone’s life is.”
Now, Atticus’ family are striving to give him the best life possible and hope that, by him partaking in clinical trials, they will be able to find a cure for other children in the future.
Blaize added: “Our main goal now is to stop this happening to other children – both through research with our own son and helping to fund further research.
“We also hope to raise money for The Brain Tumour Charity and to give Atticus the best life he can have, however long that continues for.
“He has a little sister, Hemploe, one, who he adores, and we want to give her the best memories with her big brother before he passes.”
Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “Our thoughts are with Atticus, Blaize, Emily and Hemploe during this incredibly difficult time
“Brain tumours are the biggest cancer killer of children and people under 40 in the UK and survival rates have not improved significantly over the last 40 years. This must change.
“We receive no government funding and rely 100% on voluntary donations and gifts in wills to fund world-class research which will help to drive forward our understanding of DIPG.
“Research of this kind is the only way we can offer hope to families like Atticus’s and end the devastation caused by brain tumours.
“We wish Atticus all the best with his treatment and we hope that he and his family are able to enjoy many more wonderful times together as they work though his bucket list.”
Atticus’ family are currently fundraising to raise money for The Brain Tumour Charity and to allow him to complete trips out before he passes. Donate here: https://www.gofundme.com/atticus-dpig-amp-brain-tumor-charity