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My 10-day Old daughter Is Suffering From A Skin Condition Please Help.

My 10-day old daughter requires urgent assistance who is born with a genetic disorder of Epidermolysis bullosa. It's a critical skin condition where layers of skin are not attached to each other and hence gets ripped of easily causing wounds and Immense pain.

She needs intensive care. It is an expensive treatment that is also not covered under insurance. I would urge all to be generous in supporting the cost of treatment by donating whatever amount is comfortable for you.
Please extend your support !!

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18th October 2017
First of all I would like to thank every single person who extended support in whatever way they can. Thank you so much!

My daughter is at home. Doctors said that it is the end of road for them as there is no cure, so no point keeping her at the hospital. They kind of indirectly forced me to take her home.
My daughter was born on September 1st, 2017. Since the minute she came into the world, life has been a roller coaster of emotions. Confused and concerned about her, I listened as the doctors told me that she would have to be transferred to another hospital with better facilities while her mother remained there. We were devastated and heartbroken. She was born with denuded skin. The next few days, I learned words I had never heard before - Epidermolysis Bullosa!

It often happens that she starts crying because of the painful blisters that have been part of her life since birth. The slightest friction produces agonizing wounds. We want to hold her and comfort them but at times we can’t.

Blisters must be popped, drained and dressed every day to prevent infection. Every blister is punctured in several places with a sterile needle then drained of all its fluid. Bandage change is extremely painful, takes two to three hours. New bandages must be applied one limb or body part at a time to protect damaged skin and reduce chances of infection from oozing wounds.

I admit it’s hard to display optimism when your child suffers every moment of her life. It’s especially hard to hide the effects of such a devastating disorder and the impact it has on the family. It’s difficult to say “fine” when people ask how things are because things are not fine, and they probably may never be fine again.

I know everyone is fighting their own battle and ours to continue fighting for as long as God wants us to suit up for battle. We will continue to spend countless hours removing blood-stained bandages and re-wrapping with infinite yards of pure white ones. We will continue to create mountains of dressings day in and day out in the hopes that one day soon things will turn around for the better, just as they did for the worse.

Simply put, living with EB hurts.

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder. There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.

Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death.

Epidermolysis Bullosa can result from a genetic mutation in one of 18 genes. These mutations, or errors in the genetic code, do not allow the body to either produce an essential protein or produce a working form of the protein thus resulting in extremely fragile skin.

This is the cruelest disease that I know and I hate it with all I have.

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raised of Rs.30,000 goal

5 Supporters

0 Days to go

Payment options: Online, cheque pickups

Beneficiary: Pankaj Soni info_outline

Supporters (5)

Anonymous donated Rs.200
9 days ago
Anonymous donated Rs.500
6 months ago
Varun donated Rs.3,000
6 months ago
Anonymous donated Rs.2,500
6 months ago
Amit donated Rs.1,000
6 months ago

We will pray for her recovery.