Darla Sue Brown

Help Darla Fight: Give This Little Butterfly a Chance to Spread Her Wings

Darla’s Fight Club is raising funds through Help Hope Live to help cover the uninsured medical expenses associated with Darla’s fight with Junctional Epidermolysis Bullosa (JEB).

Darla entered this world with a rare genetic condition her parents never knew they carried. Junctional Epidermolysis Bullosa causes her skin and mucous membranes to be incredibly fragile—like butterfly wings. Even the smallest amount of friction can cause her skin to blister, tear, and leave her in unimaginable pain.

And this isn’t something Darla will simply outgrow.

JEB is a lifelong condition. There is currently no cure.

For most babies, something as simple as changing a diaper is routine. For Darla, it is medical care. Gauze is soaked in sterile water, and layers of Aquaphor and Mepilex are applied to protect her wounds. Every blister needs to be carefully popped and treated.

Then there are her full-body dressing changes.

Every other day, Darla’s dressings must be completely changed—and each dressing change can take 3–5 hours.

Imagine holding your baby for hours while knowing that every touch, every movement, and every step of the process could cause pain. Imagine having to become an expert in wound care simply because you are a parent who wants to keep your child safe.

Darla’s parents are facing a reality no parent should ever have to face.

While Darla has good health insurance, insurance does not cover everything she needs. The costs of specialized wound supplies, medical necessities, and the extraordinary care required to keep her safe can add up quickly.

And there is another challenge.

Like every baby, Darla needs 24/7 care. But because of her condition and the specialized wound care she requires, traditional daycare is not an option. Her parents both work, which means they will need to hire a full-time nanny with specialized training in wound care to care for Darla safely while they work and provide for their family.

They aren’t asking for an easy life.

They’re asking for the chance to give their daughter the life she deserves.

Every donation to Darla’s Fight Club can help ease some of the financial burden that comes with caring for a child with JEB. Your generosity can help provide the medical supplies, specialized care, and support that insurance doesn’t fully cover. Darla is little. Her fight is enormous.

She didn’t choose this condition.
Her parents didn’t choose this journey.
But together, we can choose to stand beside them.

If you can donate, please give.
If you can’t donate, please share Darla’s story.

Every single diaper must be carefully prepared. Elastic has to be removed so it doesn’t injure her delicate skin. Gauze is soaked in