<img style="float: left;" src="http://images.mid-day.com/images/images/2026/aug/Adhoora-Bachpan_e.jpg" alt="" width="150" height="90" />
THIRTEEN-year-old Aryan Ughade was once an energetic child who ran around his tribal hamlet, played with his brothers and studied at an Adivasi Ashram School.
Today, he cannot sit without support, lift his head or speak. He struggles to swallow even water and needs to be fed food crushed in a mixer.
When the pain becomes severe, his family can do little but watch.
His mother, Aarti, wipes his tears. His father, Ananta, looks for medicines they can afford. His brothers sit beside him, remembering the boy who once ran and played with them.
<img src="http://images.mid-day.com/images/images/2026/aug/Aryan-Ughade-1_e.jpg" alt="(From left) Aryan&rsquo;s grandmother Bhuri, father Ananta, mother Aarti and Aryan, seated in his mother&rsquo;s lap. Pics/Sayyed Sameer Abedi" width="1280" height="720" /> (From left) Aryan&rsquo;s grandmother Bhuri, father Ananta, mother Aarti and Aryan, seated in his mother&rsquo;s lap. Pics/Sayyed Sameer Abedi
Aryan was eventually diagnosed with Subacute Sclerosing Panencephalitis (SSPE), a rare, progressive neurological disease associated with measles infection.
For his family, the diagnosis was only the beginning of a much longer struggle.
<h2>From an active child to a bedridden teenager</h2>
Aryan's family lives in Houshachiwadi, a century-old Adivasi hamlet at Post Vaje, around 17 km from Panvel near the foothills of the Matheran mountains.
The hamlet
&gt;&gt; Around 50 houses &gt;&gt; Population: About 212 &gt;&gt; Aryan&rsquo;s family: Aarti, Ananta and their children According to his parents, Aryan was born through a normal delivery at a municipal hospital on February 1, 2013. He grew up healthy and was studying in Std III at an Adivasi Ashram School when the symptoms began. 
<img src="http://images.mid-day.com/images/images/2026/aug/Aryan-Ughade-4_e.jpg" alt="Aryan&rsquo;s disability certificate" width="1280" height="720" />
Aryan&rsquo;s disability certificate
&nbsp;
<h2>What changed</h2>
First: Jerking episodes began, initially during sleep. Then: His body would become stiff, and he began losing his balance. Later: He could no longer speak or even utter sounds normally. Today: He cannot sit or lift his head without support and has difficulty swallowing. 
<h2>&lsquo;His entire body would become stiff&rsquo;</h2>
"They started suddenly during his sleep. His entire body would become stiff. He could not speak or even utter anything. Soon, he began losing his balance and falling,&rdquo; said his father, Ananta Changya Ughade.
<h2>The search for an answer</h2>
<h2>The family said they tried several forms of treatment as Aryan's condition worsened. &nbsp; The family's search included:</h2>
Doctors &rarr; A godman &rarr; Rituals &rarr; Homeopathy &rarr; Treatment in Pune &rarr; Specialist consultations The family said a self-styled godman attributed Aryan's condition to witchcraft and asked them to perform rituals, pay money and offer a hen.
They complied, hoping their son would recover.
&ldquo;We paid the godman, but the jerks never stopped, and his health condition only deteriorated with every passing day,&rdquo; Ananta said.
The family also tried homeopathy and travelled to Pune for treatment. &ldquo;We even tried homeopathy medicine and had taken him to Pune, where most parents get their children for non-curable diseases. But we were charged R5000 for a to-and-fro auto journey. We cannot afford it anymore,&rdquo; said Aarti.
<img src="http://images.mid-day.com/images/images/2026/aug/Aryan-Ughade-3_e.jpg" alt="The Ughade family home in Houshachiwadi, a century-old Adivasi hamlet at Post Vaje, around 17 km from Panvel" width="1280" height="720" /> The Ughade family home in Houshachiwadi, a century-old Adivasi hamlet at Post Vaje, around 17 km from Panvel
<h2>Then came the SSPE diagnosis</h2>
Medical consultations eventually led to the diagnosis of SSPE, a progressive neurological disease associated with measles infection. The family said a doctor attached to Wadia Hospital told them that the disease was incurable.
For Aarti, the diagnosis raised another question. &ldquo;We had taken all vaccinations for Aryan soon after his birth,&rdquo; she said. &nbsp;
<h2>&lsquo;They told us not to come back&rsquo;</h2>
Whenever Aryan developed severe jerks, cough or congestion, his parents said they took him to a doctor in Panvel. They allege that the doctor eventually refused to treat him.
&ldquo;They bluntly refused to treat him and asked us not to come to the hospital as there was no cure for the ailment,&rdquo; the parents claimed.
The family said they were left looking for medicines and advice elsewhere. &nbsp;
<h2>Two years without regular medicines</h2>
Aryan has not been on regular medication for nearly two years, his parents said.
When his condition worsens, they turn to a mobile group of parents of children with similar conditions, where families share information about medicines being used for their children.
Even then, getting the medicines is difficult.
&ldquo;We have to travel all the way to Panvel to get the medicines, which we give him whenever required,&rdquo; the family said. There is no regular supply, specialist treatment or steady source of income, they said.
<h2>A goat or hen pays the medical bill</h2>
Ananta studied until Std VIII and has no regular job. He sometimes earns around R500 a day helping construct temporary bamboo pandals for weddings and other functions. The work disappears during the monsoon. The family owns ancestral agricultural land, but Ananta says restrictions on Adivasi land prevent them from selling it freely. &ldquo;We cannot sell our ancestral land to anyone, as it is protected under the law. No one other than an Adivasi can buy the land. Without money or any source of livelihood, I have started cultivating the farmland. When money is desperately needed, I have to sell my livestock &mdash; either a hen or a goat &mdash; for a few hundred to a thousand rupees,&rdquo; he said. Aarti is also a school dropout. The couple said they have nevertheless ensured that their other children continue their education. Their elder sons, Omkar, 17, and Alankar, 16, are studying in Std XI. &nbsp;
<h2>90 per cent disability, but no pension</h2>
Aryan has a disability certificate showing 90 per cent disability, according to his family. They say he has never received a disability pension. For a family without a steady income, the lack of financial assistance has made his care increasingly difficult.
<h2>&nbsp; What his care now involves</h2>
 &bull; &nbsp; &nbsp; &nbsp; &nbsp; Help with sitting and movement &bull; &nbsp; &nbsp; &nbsp; &nbsp; Constant supervision &bull; &nbsp; &nbsp; &nbsp; &nbsp; Food crushed before feeding &bull; &nbsp; &nbsp; &nbsp; &nbsp; Difficulty swallowing water and medicines &bull; &nbsp; &nbsp; &nbsp; &nbsp; Regular cleaning and changing &bull; &nbsp; &nbsp; &nbsp; &nbsp; Medicines when symptoms worsen &bull; &nbsp; &nbsp; &nbsp; &nbsp; Travel to Panvel to obtain medicines &nbsp;
&lsquo;We cannot even afford diapers&rsquo; &nbsp; At one point, the family said it was spending nearly R40,000 a month on medicines and diapers. They can no longer afford that. Instead, Aarti uses pieces of old bedsheets to care for her son.
&ldquo;I use torn bedsheets to clean him. Every few hours, I have to change the cloth, clean him and wash it before putting it out to dry so that we can use it again,&rdquo; she said.
The family now goes to the local primary health centre when Aryan develops a cough or congestion. A nurse provides medicines, they said, but giving them to him is itself difficult because he struggles to swallow.
<h2>&lsquo;We used to play with him&rsquo;</h2>
For 12-year-old Ayush, Aryan's illness has changed what it means to have a brother. &ldquo;I want my brother to get well. We used to play with him. But for the last few years, he has not been playing and is on the bed most of the time,&rdquo; Ayush said. Aryan's inability to speak has made even understanding his pain difficult. &ldquo;He is in pain, but he does not speak or let us know what is happening to him,&rdquo; Ayush said.
<h2>&lsquo;I cannot control my tears&rsquo;</h2>
Aryan's grandmother, Bhuri, 52, said watching his condition deteriorate has been devastating. &ldquo;I can't see my grandson in such a condition. This is the first time in our family that a child is suffering from such an ailment. I am not able to control my tears,&rdquo; she said.
<h2>The family wants government support</h2>
The Ughades say they have received no meaningful assistance from local political representatives or the government. They want financial support to care for Aryan and are also calling for research into SSPE and preventive measures.
&ldquo;The government should consider our situation and provide financial assistance to take care of our ailing children, whose health is only deteriorating with every passing day,&rdquo; the couple said.
They also want more research into the disease.
&ldquo;They studied the COVID-19 outbreak and developed a vaccine. A similar effort is needed for SSPE at the earliest so that children are protected in the future,&rdquo; they said.
For Aryan's family, the immediate concern is much simpler: finding the money, medicines and care needed to get through the next day.

A tribal family near Panvel struggles to care for 13-year-old Aryan Ughade, who has SSPE and 90 per cent disability, amid rising medical costs

Mid-Day Special: ‘We cannot even afford diapers’; Panvel family struggles to care for teen with SSPE

18-year-old worker dies after falling into mixer at Panvel RMC plant

Day 2 of mid-day’s special series follows Aryan Ughade, a once-active schoolboy now unable to sit, speak or swallow, whose family says they were left searching for medicines and care after being told there was no cure

Mid-Day Special: Panvel tribal family struggles to care for 13-year-old with rare SSPE disease

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Home / Mumbai / Mumbai News / Article / Mid-Day Special: Panvel tribal family struggles to care for 13-year-old with rare SSPE disease