Love for Lilah-Butterfly

Love for Lilah-Butterfly Lilah has Recessive Dystrophic Epidermolysis Bullosa. Extreme fragility of the skin, tissues,mucosa. Prayers are appreciated but awareness is best! Find the cure!

Extreme fragility of the skin, in which skin on body/mouth blisters and falls off. It is one of the rarest conditions in the world in which there is no cure. Spread the word!

UPDATE. We are back home in Indiana and continuing recovery from home.Lilah and I are headed back to Cincinnati Children...
02/22/2026

UPDATE. We are back home in Indiana and continuing recovery from home.

Lilah and I are headed back to Cincinnati Children’s Hospital Medical Center today.

Her infection is not under control, and her pain has become extreme. After doing everything I can from home, it’s clear she needs a higher level of care. I am expecting that she will most likely be admitted so they can aggressively manage the infection and finally get her some relief.

This road has been so heavy, but we know we are never walking it alone. Lilah has the most incredible village.

If anyone would like to send her a little cheer, cards, drawings, small surprises, or just love , I will happily share her room number once we’re settled. Messages, prayers, and positive thoughts mean more than you know right now.

Thank you for loving my girl the way you do. She feels it. And so do I. ❤️

Kelseyiui

Address

Indianapolis, IN
46220

Telephone

+13174398680

Website

Alerts

Be the first to know and let us send you an email when Love for Lilah-Butterfly posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Love for Lilah-Butterfly:

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram