Help Rosemarie Paniccia help daughter Leila..

Leila Carneiro is a 3.5 yr old little girl who was born with a rare neurological condition called Lissencephaly – Miller Dieker Syndrome. At the age of 5 months she presented with over 100 seizures a day called Infantile Spasms. Due to her condition and daily seizures she is non-mobile with low muscle tone, she is non-verbal, G-tube fed due to silent aspiration and developmentally delayed. Children with Lissencephaly have a life expectancy of 2-10yrs of age due to respiratory failure and or life-threatening seizures.  Since Leila is considered medically fragile, mom had no choice but to quit her job and be her primary caregiver. She was unable to attend any typical childcare setting due to her medical condition and the one-on-one medical attention she needed on a daily basis. This has put a heavy financial burden on the family as Dad is now the sole provider working as much as possible so that medical bills and expenses are paid for.

Unfortunately, due to her low muscle tone and silent aspiration, Leila is more susceptible to illness causing her to have frequent visits to the ER/pediatrician’s office multiple times a year, along with regularly scheduled appointments with her team of specialists at Yale New Haven Hospital.

Leila is a growing little girl and with that comes the need for medical equipment that will support her growing body. She currently relies on devices that will help her sit-up and stand,feeding machine, supportive neck collar, a medical bath chair and AFO braces.  However, medical insurance doesn’t always see the “medical necessity” for these special items and we’ve been denied numerous times. Currently she has been denied of an adaptive wheelchair and “kid walker”, both items are over 2k each. She will also need a medical bed which is over 8k and eventually we will need to build a ramp to transport her in and out of our home safely as- well- as a wheelchair accessible van so that we can travel with her.

It has been a challenging 3.5 years to say the least. We have learned a lot about this rare condition, and we’re doing our best to give Leila the best quality of life possible by attending every therapy appointment, doctor’s visits and being her best advocate.We’ve devoted all our love and energy to keep Leila happy and healthy, but our financial struggles have made this time very difficult aside from what we already go through on a daily basis. Any donation will be greatly appreciated and solely used for Leila’s medical equipment, medical bills/medicine, medical supplies and a chance to give Leila the opportunity to keep striving.

Goal $15kRosemarie Paniccia Carneiro will be the beneficiary receiving all funds raised for her daughter Leila... thank you so much to all your help & support!!!