Lailas Journey

Our 1 year old Laila was recently diagnosed with a rare genetic disorder called MPS1 Hurlers syndrome which mean she lacks an enzyme in her body which breakdown the sugar molecules in your body. Without this enzyme it builds up and causes all sorts of problems. Starting with her liver/spleen, bones, brain and other parts of her body. She will need to start enzyme infusions ASAP which will be given to her every week to help give her some of the enzyme that she is missing in hopes to help breakdown the sugar molecules. She will also need a bone marrow transplant and that is best to be done before she turns 2 years in order to give her the best chance this will help with the brain barrier/block which the enzyme infusion doesn’t help in. Laila will have to under go lots of test as well as see lots of doctors in the next few months/years. She will need to see an Opthamologist, Oncologist, ENT, have a sleep study, speech and feeding clinics as well as her regular genesis and surgeons. We ask that you please keep Laila in your prayers and if you are able to donate even just a dollar is appreciated so we can be with her every step of the way and get her treatments done ASAP thank you all and god bless you! MPS Strong