‘A very special day’: A family’s dream to have their son diagnosed with the rare condition
The family of a child with the genetic condition Tay-Sachs is going through the toughest time imaginable.
The teenager is suffering from an extreme form of a rare genetic disorder that can be triggered by a certain combination of stress and trauma.
Tay-Saches symptoms are severe and the condition is potentially fatal.
His parents are facing a huge challenge, as they are trying to save the life of their only child.
The Tay-Seachs are just 15 and 14 years old, but they are already at the point of the greatest crisis of their lives.
They are living with the disease, which affects the immune system, but the family have not been able to get a diagnosis.
The family have been in denial and are desperate for the medical professionals to recognise the condition and offer treatment, despite the fact they have been told it would take months to find a suitable patient.
The child, who is in his early teens, suffers from a rare form of Tay-sachs disease which is also known as the genetic disorder Tay-Cachs, or the ‘tay’ and ‘sach’ signs.
“He is not getting enough chemotherapy, he is not receiving the right treatments and his condition is worsening rapidly,” his mother, Leila, told the BBC.
“We have been living in a nightmare.
The first week of his life, he was getting up and running with no problems.
But it was very difficult for him to sleep because he was waking up every time he got up.
He’s had nightmares about the seizures, he’s had anxiety attacks.”
When he’s been sleeping, it’s been like a nightmare, and the worst thing is that his whole body is sweating.
“So, when we were driving in the morning, we would have to get into the car to calm him down because he would get really anxious.”
My heart was beating so fast.
I can’t imagine what it must be like.
I’m really worried that he is going to lose consciousness, and then he won’t wake up.
“Tay, his condition, is devastating for the family.
This means his body can’t fight off the illness and there is an increased chance of dying.””
Tay has a severe form of the genetic disease Tay-Chachs.
This means his body can’t fight off the illness and there is an increased chance of dying.”
He has never had a medical condition before, and there has never been a case like this.
“It’s the most terrible thing in the world,” he said.
“The worst thing that I’ve ever seen, in my life, and I haven’t had any experience of it before.”
I can’t even begin to imagine what I would go through.
“Doctors have told the family that they may have to put their life on hold until they find a proper patient.
Leila and her husband, who works in a food processing factory, are in the process of setting up a fundraising page to raise money for the Tay-seachs family, with the goal of helping to pay for the treatment they need.”
We are trying our best, but we’re not going to succeed.””
It’s going be very tough for us.
We are trying our best, but we’re not going to succeed.”
Tay is currently in a rehabilitation centre and will have to undergo several rounds of chemotherapy to get rid of the disease.
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