3-Year-Old’s Rare Disease Can Take Away His Sight And Life | Milaap

3-Year-Old’s Rare Disease Can Take Away His Sight And Life

“When he was 6-months-old, we tried to make him smile. But our son just stared at us blankly. It was only months later, that he smiled for the first time. We knew then that our son was not like other children his age. He took longer to walk, talk and understand what we were saying, but then, the shape of his head started changing and his forehead started becoming prominent. That was when we found out he has a rare, dangerous disease. Now, every time he lies down, he struggles to breathe. He’s always restless and in so much discomfort and pain. The symptoms are only getting worse with time. He doesn’t have long to live without a bone marrow transplant.” – Aparna, Manchala Madhuram Sai’s mother.



Every time little Manchala Madhuram (fondly called Madhu at home) refused to eat or didn’t respond, Aparna and Srirama thought he was just being stubborn like other children. Little did they realize that their son was fighting a rare disease that will shorten his life-span considerably without an urgent bone marrow transplant.


The diagnosis changed their lives, but there’s hope – the little one can survive with a bone marrow transplant

For the past two years, this 3-year-old has been in and out of hospitals. What Aparna and Srirama initially thought were developmental delays, was soon diagnosed as Alpha Mannosidosis – a rare inherited disorder that not only affects physical growth and development but also affects the intellectual development of the child. The disorder is dangerously progressive and shortens the lifespan of the child considerably.



Sometimes, I can’t help but blame myself for what our son is going through. It’s a genetic disorder, I wish I had got tested when I was pregnant. My older son grew up normally, so I never imagined something like this would happen. All this time I thought he was just a little ‘slow’. When the doctor told us about his diagnosis, I didn’t have the strength to even react. But there’s hope. We were told that his condition has been detected in the early stages, and if he gets a bone marrow transplant now, he will survive.


However, if Aparna and Srirama delay his treatment any longer, Madhu risks developing more severe symptoms like blindness and deafness. He needs the bone marrow transplant before the symptoms become irreversible.

His father works all night to try and afford his treatment, but it’s not enough

Srirama wakes up every morning with only one thing on his mind – to somehow find a way to afford his son’s bone marrow transplant. He works for a private company and leaves for work in the early hours of the day and returns home late. On some days, he even works all night to try and make extra money. However, Madhu’s bone marrow transplant is still out of their reach.



“We’ve spent nearly 3 lakhs on his treatment so far, all of it from our savings. My husband hardly earns 8,000 a month. The only thing that’s standing in the way of our son’s recovery is our financial condition. If he doesn’t get treated in time, his condition will only worsen and then there will be no turning back. It’s now or never for our son, and we’re desperate to save him.”

How You Can Help

Manchala Madhuram Sai needs an urgent bone marrow transplant to survive the rare and dangerous disease that will slowly kill him. Aparna and Srirama are running out of time to get him the life-saving transplant and find themselves at a dead-end. With no one to turn to and little time and money left, they need your help to save their youngest and give him a chance for a healthy, bright future.

Your support will save Manchala Madhuram’s life.

Support Document


The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.

Click here to save this 3-year-old. 
Estimation letter
Estimation letter
Ask for an update
16th October 2018
Dear friends and well wishers,

Here is a quick update on his health. He was admitted in Narayana Hrudayalaya for the initial phase of treatment which is stem cells collection.

The medical team successfully collected the stem cells and he is now discharged. Currently he is overwhelmed by the procedure but overall doing well. He will undergo the next phase of the treatment in this week.

Please pray for his health and speedy recovery. Will keep you posted on further developments.

Regards,
Sreeman


Dear friends and well wishers,

Here is a quick update on his health. He was admitted in Narayana Hrudayalaya for the initial phase of treatment which is stem cells collection.

The medical team successfully collected the stem cells and he is now discharged. Currently he is overwhelmed by the procedure but overall doing well. He will undergo the next phase of the treatment in this week.

Please pray for his health and speedy recovery. Will keep you posted on further developments.

Regards,
Sreeman


24th September 2018
Dear Supporters,

Thank you for your donation during this extremely difficult time in our lives. It is greatly appreciated and I can’t thank you all enough.

We still have a long way to go. Right now Sai is very sick and currently undergoing treatment to get better before his bone marrow transplant procedure can start. Currently the proposed date for the procedure is 01/10/2018, subject to his health condition to cope with the bone marrow transplant.

Me and my family greatly appreciate your ongoing help, support and well wishes. Please keep sharing the campaign link with all your friends and family and help us to raise required funds for his treatment. Thank you again and God bless you all.

Regards,
Sree Ram (father)
Dear Supporters,

Thank you for your donation during this extremely difficult time in our lives. It is greatly appreciated and I can’t thank you all enough.

We still have a long way to go. Right now Sai is very sick and currently undergoing treatment to get better before his bone marrow transplant procedure can start. Currently the proposed date for the procedure is 01/10/2018, subject to his health condition to cope with the bone marrow transplant.

Me and my family greatly appreciate your ongoing help, support and well wishes. Please keep sharing the campaign link with all your friends and family and help us to raise required funds for his treatment. Thank you again and God bless you all.

Regards,
Sree Ram (father)
27th August 2018
Dear Supporters,

Thank you for your love and support. This means a lot to us.

Manchala is now doing okay. He has severe cold and cough for which he's being treated currently. My wife and I are being tested to check if either of us can be potential donors. Once this gets confirmed, the doctors shall take a call on the further course of action.  

Please keep supporting us so we can provide the best of medical care possible for our baby. We shall keep you posted.

Regards,
Srirama
Dear Supporters,

Thank you for your love and support. This means a lot to us.

Manchala is now doing okay. He has severe cold and cough for which he's being treated currently. My wife and I are being tested to check if either of us can be potential donors. Once this gets confirmed, the doctors shall take a call on the further course of action.  

Please keep supporting us so we can provide the best of medical care possible for our baby. We shall keep you posted.

Regards,
Srirama
Rs.3,255,210
raised of Rs.3,650,000 goal

2161 Supporters

Beneficiary: Manchala Madhur... info_outline

Supporters (2161)

AA
AYUSH ASTHANA donated Rs.101
AA
AYUSH ASTHANA donated Rs.101
V
VIJAYMALLAPPASHEGU donated Rs.100
KS
Kalyanram donated Rs.1,000
A
Anonymous donated Rs.1,000
A
Anonymous donated Rs.1,500

May God bless you!!!