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Hi everyone thanks for taking the time to visit my amazing little sister Autumn-Lily's page.
My name is Amber-Rose and I am Autumn-Lilys big sister, Autumn-Lily also has a big brother called Rueben who adores her as much as I do. Autumn-Lily is the happiest little girl you will ever meet always laughing and smiling.This is one thing people always comment on when meeting her. Oh and how could I forget she is the most beautiful little girl in the world.
Me and my family are wanting to raise funds for Stem Cell Treatment in Bangkok. My parents have been researching for months and been in touch with the hospital over there. They feel she will really benefit from this. It will help repair and renew any damaged cells.This will help with Autumn-Lily's balance, speech, coordination and hopefully get her walking. As we then want to take her on to Canada for specialist rehabilitation at Health In Motion. She would need to go to Canada 3 or more time s a year for a month for this rehab program to benefit her. This would all be amazing for my sister as it would be helping her reach her full potential. And give her what she deserves in life. As she has fought so hard in the first 2 years of her life. And we feel its our turn to do everything we can for her. Below is the story of what my amazing little sister has been through since she was born.
Autumn-Lily is now 2. She was born at 24 weeks premature, on 20th October 2012. I couldn't believe it when my mum had her was such a scary time for us all. Autumn-Lily was 920g she was the smallest baby I'd ever seen. At the time I just thought she was born early and would be home after she started to put more weight on. I didn't realise the journey Autumn-Lily and my family would be facing over the next few months. I remember going in to see her for the first time and my parents telling us not to be scared going into the intensive care unit. They said just block out the noise of the machines and monitors bleeping and just focus on my sister. Wow I couldn't believe how perfect she was just like a full term baby but tiny and see through! One thing that wasn't nice was seeing all the wires she was attached too and and how poorly she looked. Also seeing her on a ventilator to help her breath was scary. After a while we just got used to the machines going off as that was just our normal for the next few months.
On the second day of her life her lungs collapsed so she had to have a chest drain put right into her lung to stop the air leaking out. She had that in for the next couple of weeks so my mum still never got to hold her until she was 3 weeks old which was heartbreaking for her. But she never left her side she'd talk and read to her all day long. My dad had to work away down south and was only home at weekends and me and my brother stayed with my nan. Each day my mum would be hit with more scares including infections, my sister needing blood transfusions and her still not being able too come off the ventilator. And through all this she was expressing milk for her every 2 hours so Autumn-Lily could be fed this through her feeding tube. My mum believes her milk was the best medicine for her. Around The11th day of my sisters life my parents got told that Autumn-Lily had suffered a bleed on her brain. The consultant say it was very serious that she may not survive. They said they were going to be closely monitoring her. I don't know how they coped hearing that news. Then each day my mum would have to be there at ward round with all the doctors hearing them talking about my sister. All they could say is we will have to wait and see how she gets on in the next few days. Over the next few weeks her head started to grow and my parents were told that she had fluid building up in her head and that it was a condition called Hydrocephalus. They said she will have to undergo surgery. Which would involve her having a shunt fitted to drain the fluid. As it was blocked and not running down her spine like ours does. So things just went worse from there on. My baby sister had altogether 7 brain operations. She was to small to have her permanent shunt fitted so had to have temporary ones until she was big enough. The temporary ones only controlled the fluid for a few weeks.When she had her final permanent VP shunt fitted it got infected so she had to have it removed. She then had to be on antibiotics for 3weeks to clear the meningitis infection in her brain. Once the infection had cleared she had another VP shunt fitted. Then finally in March 2013 she got to come home. She had to come home on oxygen as her lungs where very weak. But we didn't care as we were just glad to take her home and all our family be back home together. As it was so hard us all being apart for such along time.
Once home Autumn-Lily was coming on really well breastfeeding all the time. This was such a huge achievement considering my parents got told she never be able eat or drink herself as the doctors said she would need a feeding tube in her tummy which she proved them all wrong on. They also said she may not know us or be able to do anything herself. Which we have never believed! Autumn-Lily is continuing to prove them wrong she knows everything and everyone of us! She can say a few words her favourite being "HIYA"which she will say none stop until she gets your attention. She has also started commando crawling and eats everything! Which is amazing as when we were told she has Hydrocephalus she would probably not be able to do anything for herself.
Autumn-Lily get really stiff in her arms and legs. She still cannot sit up fully unaided and play with her toys as well as she would like. She cannot stand up by herself either or walk. Which I know she wants to do so badly. My mum walks her around the house daily and she loves to be on her feet so much. She also loves to bounce when we hold her in the standing position and finds this really funny. We ask her to dance and she starts jumping so high. She also loves music and going on the trampoline with me and Rueben. So having the Stem Cell Therapy and going to Canada will help with all these daily struggles she faces. But no matter how how hard everything can be for her on a daily basis she never complains. As she always has a smile on her face. And tries so hard to do everything herself.
Fundraising has been such a hard decision for my parents, it hasn't been a decision they have taken lightly. As they said as a parent they want to be able to provide everything themselves for their children. But they are already paying out for private speech and specialist therapies to help strengthen her muscles. She also needs specialist equipment to help with her every day life. So they have no option but too fundraise for Stems Cells and rehab in Canada and any equipment she may need.
Sorry if I have gone on a bit but it's so hard too shorten what my beautiful brave little sister has been through. One thing I know is she is my HERO and me my brother and family love her so much. Thank you for taking the time to read her story. Please everyone give her your love and support to help her reach her full potential and one day stand and jump herself with me and Rueben.
Thank you so much
Amber-Rose & Family xxxx