Lily-Mai and her family really need your help to raise £50,000

Lily was born full term and was perfect. When she was just 6 days old she stopped feeding and became sick, by day 9 of life her heart and organs began to fail and she was rushed to her local hospital where she was put on a life support machine. A series of tests showed that her heart was the full size of her chest and was struggling to cope. Following this Lily was transported to GreatOrmondStreetHospital where M.R.I scans showed and diagnosed her with Vein of Galen Malformation, this is a rare condition caused by a congenital malformation of blood vessels in the brain that occurs prior to birth. After the first set of angiograms and embolisation surgery doctors discovered a much larger aneurism.

 

The family was told that Lily would require more treatment when she reached 10 weeks old, when she was re-admitted after 10 weeks Lily sadly suffered a severe stroke and a range of epileptic seizures resulting in a major bleed into the brain and hydrocephalus. Lily had an External Ventricular Drain which drains CSF (Cerebrospinal Fluid) and blood from the brain. The drain became blocked and after many attempts from the intensive care team at GreatOrmondStreetHospital; they made the hard decision to withdraw their care from Lily.

 

Lily was extubated in a children’s hospice and miraculously, against medical expectations, Lily woke up the following morning. Coming forward to the current time Lily has been diagnosed with:

Vein of Galen Malformation

Hydrocephalus

Registered Blind

Evolving Cerebral Palsy

Heart Murmur

Epilepsy

P.E.G. Fed

Sleep Apnea

 

Lily has recently had surgery for her feeding issues and the family has been advised that she needs another angiogram and embolisation however after what happened last time the family is weary of taking the risk.

 

The family has done some research and a highly recommended doctor in America can help Lily with her situation. However the cost has brought things to a halt, even raising the funds required to send over Lily-Mai’s medical records is proving difficult. Until the family can raise enough money Lily’s condition will continue to worsen.

 

Any donations received would be greatly appreciated as this would get Lily one step closer to the lifesaving treatment she needs.

 

To donate please follow this link: http://www.gofundme.com/g0k4g