One of the greatest joys of parenthood is watching your children grow up. But for the past 9 years we have had to watch our son do the opposite.
For 9 years we’ve had to watch our Vir fight one of the rarest diseases in the world. And day by day, it took more and more of him away from us... leaving behind only a shell of what our son could’ve been.
Little Vir's condition started making itself known when he was just a few months old. Though he was their first child Munna and Dipty knew something was wrong when the little one wasn't able to lift his head up even slightly at 4 months of age. Their worries turned into fear when he started having mini-fits where his eyes would roll up, accompanied by a fever and diarrhea. Over the next few months, the desperate parents took their son from one hospital to another, trying to get him treated. But doctors couldn’t even diagnose the problem; they prescribed MRIs, ECGs, and various other scans and tests, but they were all inconclusive. Meanwhile, Vir’s condition kept worsening. It wasn't until one doctor sent a sample of his cerebrospinal fluid (CSF) to a special lab in Zurich, Switzerland, that they discovered the horrifying truth. He was diagnosed with AADC-Deficiency.
They tried their best to make the little one forget his pain and suffering
"They said it was one of the rarest brain diseases in the world... Only around 50 people in the entire world had ever been diagnosed with it at that point. What hurt most was when they said that there was no cure. And his condition only got worse. He started getting seizures, started gasping for breath at night... He couldn’t walk, or talk, or even sit up by himself, and it felt like he wasn’t growing. But we still tried our best to keep him happy. Now we've got to know that he can get treated with gene therapy! He deserves a normal childhood, but the cost is too high for us to afford!" — Dipty, mother
It's an extremely rare and devastating disease, and Vir is the only Indian to have it
Aromatic Amino Acid Decarboxylase deficiency (AADC-d) is an ultra-rare disease that affects the way signals are passed between certain cells (serotonin and dopamine) in the nervous system, resulting in a disconnect between the brain and the body. Affected infants suffer
Severe developmental delay
Abnormal and painful rotation of the eyeballs
Weak muscle tone
Constantly painful muscle stiffness
Involuntary writhing and muscle spasms (limbs, head and neck)
Severe respiratory distress
Extreme irritability and agitation
At this point in time, only 140 children in the world have ever been diagnosed with the condition. Vir is the only Indian to have it. There are only 4 labs on the planet that can even diagnose it.
A revolutionary new treatment can cure him
"When he was younger, he needed to go to the hospital once in a few months, now we’ve to take him once every few days. He needs an hour of physiotherapy every day. He needs a machine to help him breathe sometimes. He can’t even eat anymore, because his throat is too weak to swallow food!We had to get him an operation where they inserted a tube directly into his stomach. We feed him through that now." — Dipty
But the family got some good news recently. Now using gene-therapy, more than 6 children with the disease have already been treated, and can now walk and talk for the first time in years. In December of last year, the group of leading experts reached out to Vir’s family, asking them to send him to them so they could treat him!
The only thing keeping Vir from receiving treatment now is lack of funds
Even at no-profit pricing, the gene-therapy that little Vir needs costs around 75,000 Euros. Taking into account the follow-up care and travel expenses, this equates to nearly 85 Lakh rupees. There is no way his family can afford this expense.
"We just want our son to stop suffering. They’re saying with the treatment our son will be able to walk for the first time ever, that he can call us Mummy and Papa for the first time! But all we care about is taking away his pain and suffering, that’s all we want. How can we afford such an amount, though? I work on a tourist ship helping customers, and my wife is a housewife. You are Vir’s only hope now! Please help us!" — Munna, father