An Elderslie mum whose 13-year-old son died suddenly and unexpectedly from a rare, hidden brain condition will feature in a video for Rare Disease Day 2022.

Sameena Javed’s son, Ahmar, passed away 10 days after suffering a seizure out of the blue in 2017. His family later found out he had a rare condition called AVM – Arteriovenous Malformation – an abnormal connection of veins and arteries.

In the video launched for Rare Disease Day, Sameena reads a letter about Ahmar to her son Ayaan, who will never get to meet his older brother.


This video talks about the loss of a child and some viewers may find this video upsetting

Sameena and her family were left alone to deal with the tragic pain of losing their son as there was no support available and conversations amongst friends and family were often shut down.

This Rare Disease Day, Sameena wants to make sure that other families are supported when they have lost a child and that people are not uncomfortable to have conversations about bereavement.
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Sameena told Renfrewshire News:  “Through this video, we want to highlight the need for more research into, and funding for rare conditions.

“But the main aim of my video is to highlight the situation that is faced by those who lose someone to a rare condition like we lost Ahmar.

“Usually when talking about rare conditions we hear stories about those who are living with rare conditions. While it can be difficult to read some of these stories, it can also be heartwarming and humbling to hear how people are battling against the odds to live life to the full and how they are being helped and supported to do so.

“However, those who are left behind when a loved one passes away due to a rare condition are rarely mentioned.

“People like myself who lost a son and my daughter who has lost a brother very suddenly to a condition so rare we didn’t know it existed, at the time, found there was no help or support.”

Sameena added: “There was no help for Mariya in school, then seven years old, when she lost her older brother.

“Years later there is still nothing available either through the NHS for adults like myself or no bereavement education in schools for children.”

“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.”

Lauren Roberts, Joint Interim Chief Executive of Genetic Alliance UK says: “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.”

To support Sameena and find out more about the charity her family founded, visit: https://www.facebook.com/Another-Star-in-the-Sky-111745816840362.

To find out more information on Rare Disease Day, visit: https://www.facebook.com/rarediseaseday.

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