a future for lily mai

lily-mai and her family really need your help

lily was born full term and was perfect when she was just 6days old she stopped feedin and was sick by day 9 of life she went into heart and organ failure and was rushed to her local hospital was put on life support machine and a range of tests showed her heart was the full size of her chest and was struggling to cope she was transferred to great ormand street hospital for sick children and had further tests and mri scans showed and diagnosed with vein of Galen Malformation this is a rare condition it is a congenital malformation of  blood vessels of the brain that occurs prior to birth. lily was the booked in for emergency surgery of embolisations. the first set of angiograms and embolisations showed a much larger aneurism.  family was told she would need more treatment when she was 10 weeks old at this time she was brought back for treatment and sadly lily suffered a major stroke and a range of epilepic seizures and had a major bleed to the brain resulting in hydrocephalus.  lily had a External Ventricular Drain which drains csf (Cerebrospinal fluid) and blood from the brain. the drain became blocked and would drain any fluid after many attempt from the intensive care teamthey made a hard decision to withdraw their care from lily.  lily was extubated in a childrens hospice and woke up the next morning despite all medical expectations.

coming forward to the current time lily has diagnoses of:

vein of galen malformation
hydrocephalus
registered blind
evolving cerebral palsy
heart murmur
epilepsy
P.E.G fed
sleep apnea

lily has recently has surgery for her feeding and she stopped breathing and general anaesthetic and her family was told she would need another angiogram and embolisation after what happened last time lily is at risk of another bleed, apnea's and shunt malfunctioning.  family done research and a highly recommended doctor in america can help lily with her situation.
we have been able to complete the first step by gettin her medical records over to the doctor because of generous donations from the public we are now trying to raise the funds for her surgery and the trip to take her to over to him

any donations received would be very much appreciated

 

UPDATE!!!!

due to recent circumstances Lily-mai has had a MRI scan which was sent to doctor in America to keep him updated on Lily-mai condition and when he compared her recent scan to her previous scans he has come to the conclusion that her situation has become progressively worse and now feels that any treatment that he can provide is not going to help Lily-mai he feels that where she is at the moment he cannot achieve what he orriginally thought was possible. Due to this sad upsetting news we as a family are left in the situation where we are only left with building memories and taking each day as it comes. To those who have kindly donated we cannot thank you enough. We appreciate when you donated the money it was to get Lily-mai to americ,a as this is no longer possible we would like to donate the money raised from this page to charities that are revelant to Lily-mai once again we thank you all very much.

As of now this page will be left open for the reason of trying to help build hapy memories. we as Lily-mai parents want the best time with her but now mum has had to go back to work because of the financial stress as we want to give Lily-mai the best time possible.

thank you so much xxxx

 

 

  • Trefor Jones 
    • £20 
    • 102 mos
  • Keith Evans 
    • £30 
    • 104 mos
  • Harrison Boddy 
    • £5 
    • 104 mos
  • Anonymous 
    • £5 
    • 106 mos
  • Lian Craig 
    • £5 
    • 107 mos
See all

Organizer

laura murray 
Organizer
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