Toby Nye’s mum: “I did what I needed to do for my boy”

6 January 2018......    Toby Nye celebrates his 5th birthday at a party at Gotts Park in Armley. Picture Tony Johnson.
6 January 2018...... Toby Nye celebrates his 5th birthday at a party at Gotts Park in Armley. Picture Tony Johnson.
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“I had to do it, I had no choice.”

Stacey Worsley is one of a growing number of people who in sheer desperation turn to crowdfunding to pay for medical treatment.

17 October 2017 .......   Leeds United fundraising for Toby Nye who is seriously ill.'Stacey Worsley, Toby's mum 'Picture Tony Johnson

17 October 2017 ....... Leeds United fundraising for Toby Nye who is seriously ill.'Stacey Worsley, Toby's mum 'Picture Tony Johnson

Her son Toby Nye was diagnosed with rare cancer neuroblastoma on his fourth birthday in January 2017.

Although initially on a drugs trial that would mean he would get antibody therapy on the NHS, he needed additional treatment that meant he had to withdraw.

And Miss Worsley and her family were faced with raising £200,000 to pay for the therapy, which was not routinely available on the health service, themselves.

“We are a very close family and straight away we said we will fundraise,” the 31-year-old says.

10 November 2017......  Toby Nye with the Leeds Rhinos at the Merrion Centre Christmas Lights switch on. Picture Tony Johnson.

10 November 2017...... Toby Nye with the Leeds Rhinos at the Merrion Centre Christmas Lights switch on. Picture Tony Johnson.

“We said we would do whatever we needed to do to get the money.

“We never thought for one minute that we wouldn’t try because Toby needed it. We had to do what we needed to do.”

Fiercely determined her child would have the treatment, Miss Worsley opened up about her plight to the world, launching a fundraising appeal last June and reaching out to others for donations.

At home, between visits to see Leeds United fan Toby in hospital, family members discussed remortgaging their homes and selling everything they owned to help.

Toby Nye with mum Stacey Worsley

Toby Nye with mum Stacey Worsley

“It’s not a nice feeling,” Miss Worsley, of Osmondthorpe, Leeds, says.

“You feel like you are asking other people to pay for your child and that’s your job as a parent.

“I am a nurse myself and Toby thinks that I can fix everything so it was difficult for me as well.

“We are quite a private family and we had to tell the world about our situation to get what we needed for our son. I feel like I had no choice. I had to do what I needed to do.”

20 January 2018......    Leeds United v Millwall'Leeds captain Liam Cooperb brings young Toby Nye onto the pitch. Picture Tony Johnson.

20 January 2018...... Leeds United v Millwall'Leeds captain Liam Cooperb brings young Toby Nye onto the pitch. Picture Tony Johnson.

Donations, Miss Worsley says, were slow at first but Leeds United stepped in last October, and support from players, club staff and fans helped push the family over the line.

Toby began the antibody treatment with drug dinutuximab beta at Leeds General Infirmary in January and in March, early testing showed his bone marrow was clear of cancer for the first time since his diagnosis.

Now, after Toby, who started school at Victoria Primary Academy in east Leeds earlier this year, finished his final round of the treatment, the family face an anxious 
wait for tests this month to find out whether he is officially cancer free. Describing her son as a “different child, a normal five-year-old now”, Miss Worsley explains: “Without the treatment, Toby wouldn’t have been where he is today. That treatment obviously works.

“Before, he still had cancerous cells in his bone marrow and a couple of rounds in [to the treatment], his bone marrow was clear. If we hadn’t have done what we did, he might not have been here today.”

Adding that she feels “let down” by the system, she says: “Any treatment for a child should be available. I don’t think any child should have to do without.”