A Rare Disease Has Left This Young Man Unable to Move His Limbs Or Even Speak | Milaap

A Rare Disease Has Left This Young Man Unable to Move His Limbs Or Even Speak

Sayyed Rafique Habib sits crestfallen beside his son’s hospital bed, grasping his hand and trying unsuccessfully to keep his tears at bay. He’s not sure if the young man can feel his touch, but he can see that his eyes are on him. Sayyed Aatif Rafique’s mouth twitches and his father knows what he’s trying to tell him: Everything will be alright.

But the latter’s composure breaks and he sobs uncontrollably, wondering how things went so horribly wrong. Two months ago, 25-year-old Aatif was diagnosed with a rare and dangerous disease-causing paralysis called Guillain Barre Syndrome (GBS). With appropriate treatment and medication, it is possible to make a full recovery, but Aatif’s family cannot afford to pay for it.

It started with a fever and prickling sensations in his body

Aatif works at a locksmith’s and has always lived an ascetic life. Earlier this year, he was on a spiritual tour through Kashmir, when he suddenly ran a fever. At the time, he didn’t think much of it and took regular paracetamol which reduced his temperature. But little did he know what the real cause of his fever was.

“We didn’t see the need to worry back then; even when he told us about feeling a tingling sensation in his legs, like when you get pins and needles from cramps after sitting on your legs for too long. Now when I think about it, I beat myself up over neglecting the little aches he had told us about, because they were all symptoms of a disorder called Guillain Barre Syndrome, and we didn’t even know...” - Sayyed Rashique Habib, father, breaking down in tears.

This means that Aatif’s immune system is attacking his nerves, causing extreme weakness and tingling all over his body. Since the symptoms went neglected because they hadn’t realised what it was, the sensations spread quickly and paralyzed his whole body. It can be very painful and trigger breathing issues. GBS is a very rare disorder with less than 100,000 cases per year in India.

He collapsed while praying and couldn’t even move his limbs

Aatif visited a local doctor and was given medication for what was assumed to be severe dehydration. His parents thought it was nothing serious, and that he’d be okay in a span of a few days. But only days later, their lives came apart at the seams.

“One morning, when I was going to join him for our morning prayers, I heard my wife shriek in fear. I ran to where they were and I saw my son on the floor! He had fallen over and had absolutely no energy to move. He was crying in pain, and I felt my heart drop to the pit of my stomach. I couldn’t fathom what was happening! It was very difficult to find him a free bed at a hospital [because of COVID] and when we finally did, we had already wasted several days. We prayed relentlessly that it wasn’t anything serious, but when the MRI scan results came back, our hopes were shattered. We were told that our Aatif had a rare disorder called Guillain Barre Syndrome.

He needs prolonged treatment, but his family has no way to afford it

Aatif will be able to recover if he gets immediate and extended treatment, but it will take time and effort. His condition requires a special blood treatment called plasma therapy and he will need to undergo physiotherapy to be able to move again. But Aatif was the sole breadwinner of his family, and now without a source of income, his family cannot afford his treatment.

“I have been unemployed for 3 years now. With barely any money in our hands we’ve been struggling to pay his medical bills. We have spent over INR 14 lakhs so far in borrowed money, but it isn’t nearly enough. My son is very precious to me, and I can't bear to see him suffering like this. He can’t move his limbs or his mouth, and recently, he’s had breathing issues as well. He can’t even eat by himself and has to be fed through a tube connected to his stomach. Every day, I sit by his side, holding his hand and I can see the pain in his eyes. I just want him to get better and be able to walk again, but I don’t have the money for his treatment. Please help me save him.

Aatif is showing signs of recovery with the physiotherapy he has received so far, but even a slight delay in his treatment can set back his progress. With your help and contribution, Aatif will be able to recover from GBS and stand on his own feet again. Please help him by clicking here to donate!
Patient Sayyed Aatif Rafique is 25 years old, living in Pune, Maharashtra
Being treated in Ruby Hall Clinic, Pune, Maharashtra

Receiving ICU Care treatment for Guillain-Barré syndrome

Click here to know more about Sayyed Aatif Rafique