Heidis Battle Against ATRT - Memorial Fund

EDIT, **Our sweet girl Heidi passed away on the 19th of June. She had developed some very serious side effects due to an infection she had caught during her first round of chemo. it was just too much for her little body to handle, she passed away in our arms being told how brave she was after a very hard battle in the ICU.** I have left the rest of her journey prior to this happening for others to read and understand what she had gone through. RIP Heidi Claire Smith, forever loved, forever young. We are going through the hardest thing we will ever face as parents, we have already overcame so much for our little family and never thought we would face something as devastating as one of our children battling cancer. Alot of our family and friends know that our one year old daughter, Heidi was born with a type of Spina Bifida called Lipomyelomeningocele. She has grown into such an inspirational little lady and over came so much only a short while ago in March when she underwent spinal surgery to detether her Spinal Cord and remove the Lipoma that was attached to it. The surgery was successful and she showed us all just how strong she is when she bounced back from that so quickly and was able to come home after a short recovery and went straight back to her normal cheeky self, playing with her sister Myah and her best friend Juno (Our dog)  Everything seemed perfect, she recovered quickly, her scar healed beautifully and all seemed like it was going to finally be okay. Then suddenly a week after her first birthday, Heidi woke up and she wasn't herself. Her head was tilted dramatically to the right and as the days went on other symptoms arose and  her condition got worse. It didn't sit right with us when the doctors said she simply had a case of torticollis, so we pushed them and booked an MRI.  The doctors realised it was more sinister than they had originally hoped and when the results came through, it was discovered that Heidi had a large brain tumor that had grown on the left side and was compressing the healthy tissue on the right side of her brain which had affected her brain function and its ability to drain fluid which in turn had also caused hydrocephalys.  Immediately we were taken to Sydney childrens hospital, Randwick, where the next morning she underwent brain surgery to remove the tumor. After 7 hours of waiting, we finally received the call saying that the operation was over and the surgeon was very pleased with the fact that he thinks he had removed all of the tumour.   We have now been here for a few weeks, away from home and our daughter, Myah, who is autistic and doesnt understand any of this or where her family has gone. The Biopsy results have come back, and we have been told that Heidis tumour, is an extremely rare and aggressive malignant pediatric tumour called Atypical Terratoid Rhabdoid Tumour. AT/RT for short. This kind of cancer can grow very fast and needs an aggressive form of treatment. It usually affects the central nervous system and the kidneys. This treatment includes an intense protocol of many high dose chemotherapies consistantly over a 12 month period and 6 weeks of radiation. This type of treatment is very harsh and comes with extremely great risks especially to a baby with a growing and developing brain, but we have to do everything we can to save her. We will spend the most part of the next 12 months here in Randwick at the hospital while she undergoes this treatment as it wouldn't be safe for her to leave or be far from the hospital, if she was allowed to leave for small amounts of time between chemotherapies as she will be very sick and immunocompromised, something as simple as a fever could be life threatening. Ronald McDonald house is still unavailable at this time due to the Covid 19 issue and the hospital only allows one parent in at any time to be with her. Because of how intense this treatment will be, Heidi will need us both here to be able to have around the clock care so we will need to have accommodation at the hotel next to the hospital so that we can easily take turns in looking after her and being here for her through this fight. I am creating this fundraiser to give our friends and family the choice to help us along this heartbreaking journey by sharing or raising funds to help us in anyway with the costs of accommodation, medical expenses during and after treatment and living expenses while we are unable to go home, so we can both be able to focus on being here for Heidi without the added burden of financial pressure. Please share this GoFundMe with all of your friends and family if you can to help us reach our goal and raise awareness of this horrible disease. If you are able to donate, any amount will be greatly appreciated beyond what words could possibly express. I will try to keep everyone updated as best as i can along the way and again we love and appreciate all the positive thoughts and healing energy being sent her way.