Please help little Lyla

Lyla is my niece. At 4 months of age Lyla was diagnosed with a rare genetic disorder called peroxisomal disorder. There are many peroxisomal disorders and Lyla is going through DNA testing to see which one she has, this alone could take years.  Lyla is terminal, and she has been given a 2-6 year life expectancy. I would love to raise funds for Lyla and my brother Kieran and sister-in-law Bec. Lyla has a very hard road ahead, she spends more time at appointments in hospitals then what she does at home. Lyla has to undergo occupational therapy, physio, and speech pathology for the rest of her life. There are other therapies Lyla could do with her diagnosis but being a family of 5 and Bec being Lyla's at home full time carer they just do not have the funds to do these other therapies. There are also specialists Lyla could see locally instead of traveling but then again there are not enough funds to do this either. With Lyla's disorder she suffers from moderately severe bilateral hearing loss, she has already had an operation to open up her tubes to help her breathe and swallow, Lyla may in future end up losing her sight and eventually her organs will start to shut down. This will end her life. I would love to raise enough funds so Lyla has everything she needs and her medical expenses are covered. We take time with our children for granted I think when they are healthy, my brother works 6-7 days a week and Lyla needs to have her Daddy with her at the times he will be needed the most. A simple cold/flu will put Lyla in hospital for a week as her immune system is very poor. Giving Lyla the opportunity to have both her parents support and medical bills covered will make me feel like I am helping out by setting up this fund. Having a child in your family that is terminal makes you feel helpless as there is nothing we can do to help her. I wish all of you could meet Lyla just to see how much of a loving little angel she is, she deserves the very best we can give her. I thank you from the bottom of my heart to anyone that donates or shares Lyla's story.