Armani’s Story

My daughter Armani was diagnosed with metachromatic Leukodystrophy at age 4.5 in February 2018 on Diagnosis we where told there was nothing they could do and to take her home love her and make everyday special we where in shock we grieved for 48 hrs and we got on line to the MLD sites and told our story and luckily wonderful kind man contacted us by the name of Bob Wyborn told us that there is hope and that’s not right what we where told and that there is some hope of slowing down progression of this horrible disease (the doctors told me that in 2 years she would be in a wheel chair and we would loose her by the age of ten ) So Bob informed us of stem cell transplant and gene therapy unfortunately Armani was to far progressed for gene therapy although at this stage she was still walking talking eating and at school. We where in Brisbane by March and Armani had her stem cell transplant in April 2018 and she is doing amazing I can not imagine where she would he now if we didn’t go ahead with transplant Armani is still at school still walking talking and eating we are very blessed to have been given the opportunity to go ahead with transplant Armani did decline through out transplant she lost all ability to walk but had gained it all back and had come through very strong and I pray and I have faith everyday that she is only going to get stronger and Armani is going to be ok for a very long time.. 🙏 here are a couple of photos of Armani before during and after transplant and a little video of her of what she is still capable of doing and I’m sure she wouldn’t be doing what she is doing in the video if we didn’t listen to Bob and go ahead with transplant.