“Every moment with Aakash is a precious gift. But I don’t know how long my son and I can enjoy the dad-son moments!” - Vikas (dad)
Hi, I am Vikas, Aakash’s father.
Every father dreams of seeing his child grow strong and free, but for me, watching Aakash take his first steps turned into something else. When he was just three, he began toe-walking and struggled to get up from the floor. We didn’t know then that our world was about to change forever.
After countless visits to paediatricians in Bhubaneswar, one doctor finally asked us to do a CPK test. That led to an MLPA test in 2015, and the results shattered us. Aakash was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare and devastating genetic disorder that slowly destroys every muscle in the body. DMD mostly affects boys and attacks the dystrophin gene, the largest gene in the human body, affecting even the lungs and heart in later stages. The life expectancy is heartbreakingly short, around 20 to 30 years. Aakash’s early symptoms, his enlarged calf muscles, his difficulty rising from the floor, and elevated CPK levels, were just the beginning of a brutal journey.
Since then, our lives have been a relentless fight. We’ve spent nearly ₹5 crores over the past 10 years on stem cell therapy, steroids like Defcort, physiotherapy, and every supplement, Calcimax for bones, CoQ10 for his heart, Carnisure for metabolism, and even Ayurvedic remedies like Amla and Aloe Vera. But there’s new hope now.
In 2024, a breakthrough gene therapy called Elevidys was approved by the US FDA and is now available in Dubai at Fakeeh University Hospital. It costs ₹29 crores, an unimaginable sum for us, but it could stop this disease from progressing further.
Aakash, now in Grade 8, has been using a wheelchair since 2021, yet his mind remains razor-sharp. He’s brilliant at Math, loves History, speaks fluent English, and dreams of cracking the UPSC to serve his country as an IAS officer. He’s even started his own YouTube channel.
“No act of kindness, no matter how small, is ever wasted.” — Aesop
Please save my son’s life!
He’s the kind of soul who lights up every room he enters. As his father, I see not just the disease he battles, but the courage, brilliance, and dreams that live fiercely inside him. We are doing everything in our power to give him the chance to live the life he so richly deserves. But, the cost of Elvidys and gene therapy costs ₹29 crore.
A donation from you would mean more than words can say, giving him a real chance to heal and live the life he deserves. Donate now and make a huge difference in saving my son’s life.
Ways of making a difference…
DONATE: Click on the donate now button to contribute to Aakash’s Elvidys and gene therapy.
SHARE: Share the story so it can reach out to more people and raise funds for little Aakash’s healthier future.
ଦୟାକରି ମୋ ପୁଅର ଜୀବନ ରକ୍ଷା କରନ୍ତୁ!
ସେ ଏପରି ଜଣେ ଆତ୍ମା ଯିଏ ପ୍ରବେଶ କରୁଥିବା ପ୍ରତ୍ୟେକ କୋଠରୀକୁ ଆଲୋକିତ କରିଦିଏ। ତାଙ୍କ ପିତା ଭାବରେ, ମୁଁ କେବଳ ସେ ଯେଉଁ ରୋଗ ସହିତ ଲଢ଼ିଛନ୍ତି ତାହା ନୁହେଁ, ବରଂ ତାଙ୍କ ଭିତରେ ଯେଉଁ ସାହସ, ଚମତ୍କାରିତା ଏବଂ ସ୍ୱପ୍ନ ରହିଛି ତାହା ମଧ୍ୟ ଦେଖୁଛି। ଆମେ ତାଙ୍କୁ ଏପରି ଜୀବନ ବଞ୍ଚିବାର ସୁଯୋଗ ଦେବା ପାଇଁ ଯାହା ସେ ଏତେ ଯୋଗ୍ୟ ତାହା ଦେବା ପାଇଁ ଆମର ଶକ୍ତିରେ ସବୁକିଛି କରୁଛୁ। କିନ୍ତୁ, ଏଲଭିଡିସ୍ ଏବଂ ଜିନ୍ ଥେରାପିର ମୂଲ୍ୟ ₹29 କୋଟି।
ଆପଣଙ୍କ ଠାରୁ ଏକ ଦାନ ଶବ୍ଦ କହିବାଠାରୁ ଅଧିକ ଅର୍ଥପୂର୍ଣ୍ଣ ହେବ, ତାଙ୍କୁ ସୁସ୍ଥ ହେବା ଏବଂ ସେ ଯେଉଁ ଜୀବନ ଯୋଗ୍ୟ ତାହା ବଞ୍ଚିବାର ପ୍ରକୃତ ସୁଯୋଗ ଦେବ। ଏବେ ଦାନ କରନ୍ତୁ ଏବଂ ମୋ ପୁଅର ଜୀବନ ବଞ୍ଚାଇବାରେ ଏକ ବିରାଟ ପରିବର୍ତ୍ତନ ଆଣନ୍ତୁ।
ପରିବର୍ତ୍ତନ ଆଣିବାର ଉପାୟ...
ଦାନ କରନ୍ତୁ: ଆକାଶଙ୍କ ଏଲଭିଡିସ୍ ଏବଂ ଜିନ୍ ଥେରାପିରେ ଅବଦାନ ଦେବା ପାଇଁ ଏବେ ଦାନ କରନ୍ତୁ ବଟନ୍ ଉପରେ କ୍ଲିକ୍ କରନ୍ତୁ।
ଶେୟାର କରନ୍ତୁ: କାହାଣୀଟି ସେୟାର କରନ୍ତୁ ଯାହା ଦ୍ୱାରା ଏହା ଅଧିକ ଲୋକଙ୍କ ପାଖରେ ପହଞ୍ଚିପାରିବ ଏବଂ ଛୋଟ ଆକାଶଙ୍କ ସୁସ୍ଥ ଭବିଷ୍ୟତ ପାଇଁ ପାଣ୍ଠି ସଂଗ୍ରହ କରିପାରିବ।
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.