Little miss lila Grace

One of our twin girls Lila Grace has a very rare genetic disorder. She has diamond black fan syndrome. Lila and evie were born at 36 wks. When Lila was born she had to go straight onto oxygen as her sats were way down, she was born with 4 fingers on each hand. Her left arm was formed with only one bone her arm bends in where her elbow is. Lila was born with a heart defect hole in heart, leak in left side where the blood goes back up instead of out and through her body and at the bottom of her heart she has an enlarged aorta. Lila was in nicu for 3and half wks, in the 1st couple of days the doctors told me to prepare myself as she might go into heart failure as her heart was trying to do to much for her body. She had toher go on the c-pap machine a few times so more oxygen could go through her body. We then found out she was really hard to canulate for months the doctors would take multiple stabs at my poor baby to canulate her so they could give her much needed blood. Lila and I live at the hospital she is literally admitted weekly . In Feb this year her hemotologist suggested that Lila get a portacath which is a device that goes through the main artery of the neck and down to her heart so within a wk it was put in and everything seemed to be working we left the hospital and the doctors said that the port needs to b flushed every month so it was time for a flush and when they tried to flush it it wouldn't flush properly and Lila got very sick very quick like really went down hill really fast couldn't move was just really limp and swollen I said something is not right with my baby fix her now I was beside myself when the peads reg came in to look at Lila she just said umm I think she is just sick there's nothing really wrong with her just a virus well I lost my shit told her to get out and to call the doctors in charge now. When. The doctors came down they tried to flush the port again and she got sicker more swollen she was having septic showers. We transferred to Sydney where they tried there to flush again where she had another septic shower and couldn't by this time see her head was like a basket ball. They took her down to ct scan ultrasound and xray and found out she had a blood clot at the top of her heart where the port went in. They were going to leave her asleep for the wkend see how she went with the blood thinners to work then decide something on Monday she was placed in icu over the weekend but got worse and was rushed down to surgery where they took the port out. She spent 1 whole wk in icu this is the 2nd time we neally lost our little girl. Heartbreaking :(.. we r now in the process of waiting for a bone marrow doner and more info on stem cell transplant now that we know what Lila has this includes 6wks of intense chemo to shut her immune system completely down and put new stem cell in. She will get very very sick in this time and could die also so we r left with a hard decision to make. In the next coming weeks she will have another surgery to put a central line in witch is like the port but different I'm so scared that we will go through the same thing again. With all the hospital appointmens and unexpected hospital visit driving back n forth so I can see my other kids and kids n hubby to see Lila. We never ask for help but at this present time we just need a little helping hand. Anything would help us at the moment. Thank u for taking the time to read