Miracle Baby Given ‘World’s Most Expensive’ £1.79Million Wonder ᴅʀᴜɢ Helped Him ‘Reborn”

Miracle Baby Given ‘World’s Most Expensive’ £1.79Million Wonder ᴅʀᴜɢ Helped Him ‘Reborn”

Little Edward Willis-Hall is celebrating after being given the best birthday present ever a month early – the world’s most expensive ᴅʀᴜɢ.Edward Willis-Hall as a ʀᴀʀᴇ ɢᴇɴᴇᴛɪᴄ ᴄᴏɴᴅɪᴛɪᴏɴ ᴄᴀʟʟᴇᴅ ᴛʏᴘᴇ ᴏɴᴇ sᴘɪɴᴀʟ ᴍᴜsᴄᴜʟᴀʀ ᴀᴛʀᴏᴘʜʏ ᴡʜɪᴄʜ ᴏFᴛᴇɴ ᴇɴᴅs ɪɴ ᴅᴇᴀᴛʜ before the age of two but £1.79million ᴘɪᴏɴᴇᴇʀɪɴɢ ɢᴇɴᴇ ᴛʜᴇʀᴀᴘʏ Zolgensma has seen him ‘reborn’. One-year-old Edward was born with sᴘɪɴᴀʟ ᴍᴜsᴄᴜʟᴀʀ ᴀᴛʀᴏᴘʜʏ (SMA) causing a lack of protein needed for ᴍᴜsᴄʟᴇ development. In August, Edward was given a new gene therapy called Zolgensma costing £1.79m, through the NHS. Zolgensma is thought to be the most expensive ᴅʀᴜɢ in the world, with NHS England ʀᴇᴘᴏʀᴛᴇᴅʟʏ ɴᴇɢᴏᴛɪᴀᴛɪɴɢ a discount price on the £1.79m.

Now, mum Megan Willis says her son has reached milestones she never thought possible – including rolling over sitting on his own and even taking his first assisted steps. Megan, from Colchester, Essex, said: “We are so proud of Edward.“He’s doing incredibly well. He is far surpassing our expectations. We are so incredibly lucky. All I ever wanted was for him to be able to sit and I knew then he would have an amazing life. We have been working on his walking for a few weeks and he moves his own legs in the gaiters, which is a really good achievement.”

The delighted mum said her son has now ɢᴏɴᴇ Fʀᴏᴍ ʙᴇɪɴɢ ʟᴇᴛʜᴀʀɢɪᴄ to a ᴄʜᴇᴇᴋʏ ᴀɴᴅ ᴘʟᴀʏFᴜʟ baby.

Edward, who was diagnosed at two months old, was originally ʀᴇᴄᴇɪᴠɪɴɢ ᴛʀᴇᴀᴛᴍᴇɴᴛ ᴠɪᴀ a ᴅʀᴜɢ called Sᴘɪɴʀᴀᴢᴀ – ɪɴᴠᴏʟᴠɪɴɢ ʀᴇɢᴜʟᴀʀ ɪɴᴊᴇᴄᴛɪᴏɴs ɪɴ ᴛʜᴇ sᴘɪɴᴇ for life, compared to the one-off injection of Zolgensma. That was ᴛᴇʀʀɪʙʟᴇ time with her. So now, everything is coming to her son is miracle, his life will be brighter, happier and there is a future.Despite it being a new ᴅʀᴜɢ and little is known on the long-term outcomes, Meghan said she believes this ɢᴇɴᴇʀᴀᴛɪᴏɴ ᴏF ʙᴀʙɪᴇs ᴡɪᴛʜ SMA will be the first to reach adulthood.

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