WATCH: Chapel grandad’s video plea to Prime Minister to help poorly tot Ellie

Will's granddaughter, Ellie.
Will's granddaughter, Ellie.

A doting Chapel-en-le-Frith grandad has created a video appeal on YouTube to Prime Minister Theresa May for help with a rare genetic condition his beloved granddaughter suffers.

Sixteen-month old Ellie has been diagnosed with cystinosis - which means her cells are under constant attack from crystals of the amino acid cysteine.

Even with a gruelling daily medication timetable, the toddler is likely to need a kidney transplant by the time she reaches her teens.

Grandad Will Newman said: “At Prime Minister’s Question Time on September 7, Theresa May told Parliament, ‘we are committed to making sure that patients with rare conditions get access to the latest medicines and indeed are taking some bold steps to speed up that process.’”

Now the desperate grandad is appealing for others to watch the video and share it to grab the PM’s attention.

He added: “Cystinosis can be managed with a punishing regime of medication but these treatments tend to taste and smell quite unpleasant and only delay the impact of cystine crystals.

“Like the other 150 people with Cystinosis in the UK, Ellie can only survive by taking Cysteamine every six hours to dissolve the crystals.”

Will said that while research was working towards a possible cure there was still only a faint hope on the horizon.

“In the meantime there is a form of delayed-release Cysteamine that only needs to be taken every 12 hours,” he added.

“It has been launched in the USA but is not yet available on the NHS due to the cost.”