Baby Metehan has arrived in the US to start the process and testing for treatment.
At the beginning of September 2020, Baby Metehan’s family started a crowdfunding plan in a campaign to raise a huge target of 1.9 million pounds.
Baby Metehan was diagnosed with spinal muscular atrophy (SMA) type 1 – a neuromuscular disease so severe that many children with SMA type 1 do not reach the age of two. Recently the UK approved Zolgensma treatment for SMA, however, this is not currently available and most treatments are focus on making SMA patients more comfortable.
In the USA the Zolgensma which has been called the ‘world most expensive treatment’ is available and the goal set was to cover Baby Metehan travel and treatment expenses.
On January 13 after months of hard campaigning, his family announced they had met the goal set and his journey now shifted focus towards getting to the US.
Tuncay and Zeliha Fidan, Baby Metehan partners have been given updates on social media and announced they had arrived in Boston from Leicester on Friday.
Sharing a post from Boston Children’s Hosptial where for the next two weeks Baby Metehan will be undergoing testing.
In the post they said: “… Thanks to you, we were able to come to this hospital today on our journey of hope we had for our son. We know that our struggle and our journey will always continue…”
Adding ” Insallah, MeteBaL will take his medicine after having the necessary tests and tests for two weeks. Keep us in your prayers. We love you very much”
