Levi's fight

Levi is a now a gorgeous 18 week old baby boy and has not left the hospital bed since his birth. Before Levi was born there was no indication of any complications, after a traumatic birth, problems began to unravel for this beautiful baby boy.

From birth Levi has struggled to breathe resulting in the need for oxygen 24/7, swallowing difficulties and has suffered frequent seizures, and had difficulties finding his voice. A few short weeks after his birth he was diagnosed with Moebius syndrome, the most heartbreaking part of this syndrome is that Levi will never be able to smile and will remain expressionless for life, he is unable to feed via his mouth and will be fed through a tube.

There is no cure for Moebius only management for his day to day care.

Levi has undergone every test under the sun, poked and prodded daily with what seems like a never ending battle with new complications arising weekly, Levi was flown in an emergency flight to starship hospital for a Tracheostomy after his mother had to preform CPR on her son at only 10 weeks old. Since being at starship Levi underwent a second operation on his stomach, a Fundoplication and Gastrostomy.

Bonny and Daniel are absolutely amazing parents that have been faced with a life changing situation that no parent should be faced with, their strength and courage along with Levi's inspires me.

Bonny has been living in the hospital/n.i.c.u since levi's birth and is desperate to have some form of normal life back, which when they return home entails finding a suitable house to rent for Levi's extensive health requirements and equipment including home help.

Daniel has had to stop work also until help is available as care is required 24/7 including suctioning every 30mins during the night.

This family is in desperate need of financial support to help with medical care future ongoing therapy with the possibility of a non-funded life changing surgery giving levi the ability to smile, and to ease the stress of day to day life.

Money fundraised will be put toward help with home care, equipment including a hospital type cot allowing proper care to be given easily, a portable suction machine ranging from $300-$600.

As this is an on going life time thing its hard to work out the cost involved but this wee man is looking at a life of therapy/surgeries other cases known with the child going through over 40 operations.

Next year there is The 12th Moebius Syndrome Conference that will be held at the Long Beach Hilton, Friday July 15 – Sunday July 17, 2016 in Los Angeles

we are hoping to get enough money to send them over to meet with doctors/specialists and families alike as this is such a rare disorder this is something they need to do support wise and in aid of a better understanding of the disorder and their life ahead, cost for this trip will be around $6000 thats not including the likely hood of that increasing if they are able to take levi with them.