A MUM-OF-THREE is raising awareness of the need for bereavement education and support after her son died suddenly from a rare disease.
Sameena Javed's son Ahmar passed away from Arteriovenous Malformation (AVM) in April 2017 when he was just 13-years-old.
AVM causes abnormal connections between arteries and veins and affects around one in 10,000 people.
These malformations most often occur in the spinal cord or in the brain but can develop anywhere in the body.
Sameena, who is from Elderslie, says they had no idea Ahmar had the condition until one day he had a seizure.
She said: "One day he went to his martial arts class and I got a phone call saying he’d been sick.
"I didn’t think anything of it, I thought maybe it was just something he’d eaten.
"I went to pick him up and when I got there the instructor was standing outside at the gates waiting for an ambulance.
"I was thinking ‘why did he need to call an ambulance’ and apparently he was having a seizure but even then I didn’t think anything of it, I thought even maybe it was epilepsy, we have epilepsy in our family."
Once Ahmar got to the hospital, doctors discovered he had a bleed on the brain due to AVM.
Sadly, despite having a craniotomy to relieve pressure on the brain, Ahmar died 10 days later.
Now Sameena, 44, is highlighting the need for improved bereavement education and support.
She said: "The bereaved are often forgotten about.
"Even if you take Rare Disease Day, often you will hear about people living with rare conditions, what it is like for them, how it is for them to get treatment or if the treatment is not available what life is like, their struggle to live life to the fullest.
"And while some of these stories are difficult to read, some of them are heart-warming, people overcoming the odds.
"What about the people that lost someone to a rare condition?
"They’re never spoken about, they’re left to just get on with it, there’s no support for them."
After Ahmar died, Sameena found there was "absolutely nothing" available to help her and her family.
She said: "Even at the hospital no one came along even with a wee card or a number to call if we needed any help.
"The GP was nice enough but they gave us diazepam but that’s not the answer.
"I had another child to look after and I couldn’t afford to go home and take diazepam.
"No one offered us a number of a councillor or anything like that, we were left to deal with it on our own, we had to find our own support."
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Sameena wants to see compulsory bereavement education introduced into the school curriculum and she believes if it had been available it might have helped her daughter Mariya, now 12, better understand Ahmar's death.
Her petition for bereavement education got a second reading in the Scottish Parliament and she is now working with includem, the government's National Bereavement Coordinator, to come up with a timeline of support.
She said: "Death is a part of life, everyone will be affected by it at some point, but it’s a subject we don’t talk about.
"Why shouldn’t we educate our children about it?
"Some children will be scared of it but if we teach them in the right way it might just make it ever so slightly easier to understand if they were affected by it."
Sameena would also like to see more funding for research into rare conditions and the family set up a tribute fund called Another Star in the Sky in Ahmar's memory.
So far, they have raised more than £15,000 for research into rare conditions and to set up bereavement services at Glasgow Children's Hospital.
Rare Disease Day is recognised on February 28 by people in more than 85 countries around the world to raise awareness of the 300million people living with a rare condition across the globe.
You can watch a video Sameena made for Rare Disease UK to raise awareness of those who have lost their lives to a rare condition and to promote discussion about bereavement HERE.
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