Hornchurch mum ‘overwhelmed’ after public rallies to raise £100k for little boy’s treatment in USA
PUBLISHED: 11:45 26 December 2016
The mum of a little boy who has up to 25 seizures a day and who was denied funding by the NHS for a life-changing procedure, says “words cannot describe her joy” after the public donated £100,000.
Seven-year-old Nathan Box, of Hornchurch, was struck down with a mystery illness more than two years ago while on holiday, which causes him to have up to 25 seizures a day.
Doctors initially believed Nathan had epilepsy, but after numerous tests over the course of months, the family were told the Hacton Primary pupil had a very rare condition known as hypothalamic hamartoma.
Since discovering the medical implications, the family have been fighting hard to get treatment, which is only available in Texas, USA.
And they were told the NHS will not fund the treatment.
It led to mum Susie creating a Just Giving page in the hope of somehow raising enough money for the expensive procedure and just a little more than a week before Christmas, the family hit the £100,000 target.
“Words cannot describe how we are feeling, the support has been phenomenal,” Susie said.
“I feel like saying thank you to everyone who donated will never be enough. I am overwhelmed by how many people have reached out to us.”
The family have already been in touch with Great Ormond Street in Texas and are hoping to fly out for treatment at the end of February or start of March.
The procedure will mean Nathan no longer has to spend the rest of his life taking medication that can only lessen symptoms.
“2017 will be a new start in Nathan’s life,” Susie said.
“He will now be able to ride a bike and play outside like any other normal boy would do.
“I can’t wait to see him outside enjoying himself with his friends – which he has not been able to do as you always need to think about when and if a seizure may occur.”
A concert will now be held on February 12 at the Orchard Theatre in Dartford in a bid to raise money for flights, accommodation and any unexpected costs.
But Susie is also using the concert as a celebration event and a way of thanking the 3,500 supporters on the Just Giving page.
She said: “An anonymous donor has pledged to price match the concert, meaning if we were to sell it out, we could raise £40,000 in just one night.
“I want the concert to be a celebration too and thank every amazing person who has got us to this point.
“The family have read every single comment on the page and so many have left me in tears.”
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