On the 7th of Janurary 2013 we found out we were expecting, after being told natural conception is unlikely for myself due to my own health problems.. We were ecstatic! We had a great pregnancy until the end, I had undiagnosed pre-eclampsia.. It wasnt a very nice delivery.. When we got home we decided everything was only going up from here! 2014 was going to be our year. Levi was hitting milestones and keeping us on our toes.. We he was a happy normal baby. Then.. when levi was 5.5 months, he became unsettled.. He cried all day and all night, we were exhausted.. We took him too 8 doctors including 3 ER trips.. I got called a neurotic mother.. They told us he just had reflux and it would go away.. But it didnt. We couldnt handle it anymore.. We got a second opinion.. We finally found someone who confirmed what we were saying.. Theres something wrong. We were admitted to hospital under observation, Levi stopped feeding 24hrs into admission.. He had a nasal tube put in.. It was horrible. Within 4 days we were sent to the childrens hospital.. Levi was sent for MRIs, lumbar punchers, EEG and a muscle biopsy.. We had to wait 6 weeks for results to come back, they suspected mitochondrial disease.. We thought it was the worst news in the world. May 20th 2014, Levi was 8 months old.. His neurologist phoned and said we need to come in today they had Levis results back.. It was worse then what they thought.. Levi was diagnosed with Leukodystrophy, Krabbe Disease.. A disease that the doctors in Australia have no idea how to deal with.. Krabbe disease is an extremely rare disease, that effects 1 in 100,000 people.. Levi is 1 of 4 people in the whole of Australia living with it.. Levis future is short.. The standard life expectancy is 2 years.. He has already lost his ability to be able to control the movements of his body, with persistence and dedication we were able to bring Levis feeding ability back.. The sad fact for us is.. For how long? Levi will eventually go deaf and blind and cease almost all communication with us.. We hold hope for Levi, he laughs, smiles, makes happy grunts and loves his family and friends.. We make his life as normal as possible.. Our sad reality is that Levi wont be here for a long time, he will never walk, say mum or dad and we will never see him go to school.. It not only hurts because this is a future that we have no control over but it hurts knowing that it could have been detected at birth.. Leukodystrophy can be detected in a test that is already compulsory in Australia.. The heel prick. I ask daily why dont we test for these thing? Why did it happen to our baby? Why did no one listen to us? Why, just why? Truth is there are so many deadly diseases out there that can be detected and treated at birth.. If Levis disease were picked up at birth, he could have gone through a stem cell transplant to stop the disease progressing.. Leaving Levi to live a pretty normal life.. He would run, talk and play.. We need your help to get this disease known and out there! Help us find a cure! I ask that your share this around, help us get it out there, Im not asking for you to tip water over your head, Im not asking pity.. Im asking for something so simple! Help us raise awareness! September is leukodystrophy awareness month.. So In preparation I wrote this story.. A story that I struggled to find words for, a story that I cry tears about everyday.. Help us help them! #krabbedisease #leukodystrophyawareness #findacure
Posted on: Sat, 30 Aug 2014 07:37:57 +0000
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