Call for help to save and improve life of twins – And to raise awareness of rare illness

RESIDENTS in Thurrock, including former neighbours and friends are being asked to help a pair of one-year-old twins and their family after they were diagnosed with a life-changing illness that will require treatment for many years reports Thurrock Nub News.

Raffy and Siddy, are identical twin boys who currently live in Benfleet, but who are steeped in a Thurrock background. A day after their first birthday they were diagnosed with Spinal Muscular Atrophy type 1 (SMA 1), a rare progressive neuromuscular genetic disease that, if left untreated, is likely to be fatal before they are two.

And even with treatment, the pair and their family face a long and hard road ahead. So an appeal has been launched to help raise money to access dual treatment, so the twins receive the best physiotherapy and treatment and their family cope with the huge financial burden to come.

For the full story, click below

https://thurrock.nub.news/news/local-news/call-for-help-to-save-and-improve-life-of-twins-and-to-raise-awareness-of-rare-illness-134068

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