As most of you know we are raising money to help Emmy-J have have put 3000 as we raised 3254.05 on last just giving site but could'nt extend it xx we are trying to raise as much as we can to get Emmy-J the help she need and to give her best care possible xxx
please keep sharing and donating, thank you ,thank you, thank you xxxx

Recently we found out Emmy-J Moran has a life limiting illness called SMITH LEMLI OPITZ SYNDROME and this is a very rare condition.

We are planning to take our daughter to America to a two day conference; to meet, doctor's, professionals, scientist's and family's with SLOS syndrome.

As this is a rare syndrome not many people in the UK have this disorder, In America we will be able to meet professionals and family’s to find out everything we can to support Emmy-J. In America they have done studies and trials on this very rare condition; this will help us give Emmy-J the best life possible.

Hopefully by going to America, we will be able to prolong her life and learn the challenges of having a child with a SLOS also to have a better understanding of medication and cholesterol that Emmy-J may be able to get to improve everything in her life.

Facebook Page
https://www.facebook.com/groups/1177155638984388/

The conference Page
http://www.smithlemliopitz.org/