A Paisley mum whose 13-year-old son died suddenly and unexpectedly from a rare, hidden brain condition is speaking out about her heartache to mark Rare Disease Day 2022.
Sameena Javed’s son Ahmar tragically passed away in 2017, 10 days after suffering a seizure out of the blue at karate practice. His family later found out he had a rare condition called AVM - Arteriovenous Malformation - an abnormal connection of veins and arteries.
Sameena, her husband Javed and their family were left alone to deal with the pain of losing their son as there was no support and conversations were often shut down.
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This Rare Disease Day, Sameena wants to make sure that other families are supported when they have lost a child and that there are conversations around bereavement.
She said: “I am sharing my story on the Rare Disease Day website to highlight the impact of losing a child and the need for more research into and awareness of rare conditions.
“Also, I hope this will highlight the need for improved bereavement education and support, lending support to my previous petition to the Scottish Government that compulsory bereavement education should be included in our school curriculum.”
She added: “After all, the only guarantee in life is death. By creating a legacy for Ahmar, we want to educate others about bereavement so that families know it’s OK to talk about it.”
After Ahmar’s death, Sameena and Javed, who live in Elderslie, set up the charity, Another Star in the Sky, which aims to fund research into rare diseases and help support child bereavement services and create a positive legacy for Ahmar.
In the video, which will be released on Rare Disease Day, February 28. Sameena reads a letter about Ahman to her son Ayaan, who was born in 2018 and will never get to meet his older brother.
Lauren Roberts, Joint Interim Chief Executive of Genetic Alliance UK, the charity behind Rare Disease Day, said: “This Rare Disease Day we want to make sure that unheard voices are shared.
“Sameena’s story is so important in highlighting the impact that losing a child can have on the whole family and why conversations around bereavement are vital.”
An estimated 300 million people worldwide live with a rare condition. On February 28, Rare Disease Day will be celebrated by people in more than 85 countries across the world.
To find out more about the campaign and view Sameena's video, go to raredisease.org.uk
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