Help Layla Live Her Best Life at Home

We are the Alacan family we have had two beautiful daughters with a rare terminal genetic disorder called 4H Leukodystrophy. 4H leuko is a white matter disorder of the brain and overtime causes the central nervous system and body organs to shut down. Our oldest daughter, Jamie unfortunately lost her battle with this disease in April of 2023 and we have been focusing on giving Layla the best life we can for her duration of time here with us.

Layla has been having a hard time over the last few months, and in early September her stomach had shut down forcing us to go on Total parenteral nutrition (IV nutrition). Just this last Thursday 10/10 Layla had an apnea event that left her unresponsive and in the hospital. She did fight to wake up from that event and Layla has made the decision to come home on hospice care on 10/11 and will be resting and controlling her days at home surrounded by love from her family and close friends.

This has been an incredibly hard time for our family having to go through this disease process once again and we really do appreciate any and all help as it all goes to covering medical bills and funeral cost when that time comes.