Lily Belle's Journey
Lily's story: Lily was born a healthy baby girl on November, 09 2012 She hit all her milestones normally. When she started walking I noticed she walked with her toes in at the age of 1 1/2. I mentioned it to her Dr and she said she was fine and to give her sometime to learn to walk better. In September 2014 she had a low grade fever for a few days and developed a rash. She also lost her appetite and I noticed she was constipated. After 3 days she was better with no fever and wanting to eat normally. I noticed all she wanted to do was sleep and when she was awake she was lethargic. We took her to another Dr that wasn't her regular pediatrician because it was Sunday and they were closed. They told us to go to cook children's ER. They determined that she was in fact constipated and that could be causing her to be lethargic. They admitted her and started her on something called "go lightly" to clean her tummy out. After 2 days or so on the go lightly she started to wake up more and was more alert. She was hooked on IV. They didn't allow her to eat until the treatment was all done. They also wanted her to stay until everything in her tummy was clear. That took about 5 days. Throughout the time at the hospital they ran so many test trying to figure out why she was sleeping so much. Everything was clear... after they removed the IV she was wake even longer and wanted to get up and walk. She didn't walk well for the team so they called in a neurologist and physical therapist. I told them she has always walked this way and that I had mentioned it to her pediatrician and she said it was normal. The neurologist said he wasn't worried about her brain and that she just needed some physical therapy to correct her ankles because they were stiff. On day 7 at our hospital stay they let us go home. 5 months later was Lily's 2 years old check up, I again mentioned the walk to her Dr and said "oh that's not normal, it might be nerve damage" She also said her right eye seemed a bit out of place, something I never noticed before. She referred us to a neurologist. At the end of March 2015 we finally see the neurologist and he said he thinks her spine might have gotten swollen because of th e infection she had back in September. He ordered a MRI and he wanted ASAP! A week later we took her to go get the MRI done. It was so scary to me... the next day we get a phone call from the neurologist office that he wanted to see us ASAP! I knew something wasn't right :( there he went on to tell us that he had found so many abnormalities in her brain that indicates leukodystrophy. I was in shock when he was explaining to us what this was... I felt like someone sat on my chest full force! While he was explaining to us that my Lily bear would die as a child, she was kissing me nonstop and I knew it was because I was crying. After that day we had so many appointments to go to. Genetics, orthotics, vision and another neurologist for botox injections. They ordered alot of blood work to confirm their findings of leukodystrophy. All came back negative! I was starting to get my hopes up that maybe they're wrong! Until genetics Dr sent the MRI to a leukodystrophy specialist in Dallas. The specialist said he thought it was vanishing white matter disease. So they checked her blood for that specific one. 3 weeks later August 11th 2015 I got the phone call "I have bad news for Lily" that is all I heard and I knew. This is any parents worst nightmare... #leukodystrophy "vanishing white matter disease" #VWM The worst day of my life was when the Dr said "your child will die as a child" it's the worst pain imaginable when hearing something like this, both emotional and physical! I don't even know how my body is still functioning after this news. This horrible disease is a very rare genetic disorder and because it is so rare, there is NO CURE! My baby WILL be a angel and there is nothing I can do, but be strong and keep going to make her life as comfortable as possible. This monster will take my Lily's ability to walk, sit up, talk, her ability to see and hear, even eat and breath... until her brain gives out. If you aren't able to help financially, you can help by sharing this page with friends and family and having them share as well is enough help! All the testing was all done within 4 months. Lily has a older sister Nadia (7) we do not have plans to test her, unless a cure or treatment is available.
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