In 2012, two years after starting a new life in Singapore, I received the earth shattering news I had cancer. It was heartbreaking not only because I was so young, but also because we were hoping to start a family. Luckily it was early stage, and, never one to give up, I underwent a fertility sparing operation that cured me of the cancer and promised to allow us to conceive naturally.
2 years later, imagine our excitement when I discovered I was expecting our first child.
But 23 weeks into my pregnancy, tragedy struck. My waters broke and I was rushed to hospital. 2 weeks later, in hospital, I developed a severe hospital acquired infection which tragically passed to Elsa before the emergency c-section. On day 2 of life, aged 25 weeks, we were told that our precious baby had meningitis. She was given a bleak prognosis with a slim chance of survival. It seemed things could not get any worse.
Then, disaster struck again. After intense back pain, a scan revealed the worst possible news for me. My cancer was back. But this time it was the most advanced stage, stage 4b, with a prognosis of 6 months to live. I could not believe we could have further worse news as a family, but it became a greater incentive to fight for Elsa’s survival and to see her grow up, knowing if she survived, she would need extensive support.
2 years later, despite the grim outlook, both Elsa and I are still here, continuing to fight! I have been so proud of and inspired by my baby girl. I hoped that, being the fighter I am, Elsa would have the same resolve to get past any obstacle. On so many occasions she amazed not only us but also the doctors. After 5 months of intensive care, numerous brain, stomach and eye operations and overcoming meningitis, she finally came home.
Despite our fighting spirit, the last 2 years have still been extremely challenging. Elsa has only the right side of her brain and only one partially functioning eye. This means she has multiple and complex special needs including limited vision, severe cerebral palsy and seizures. Elsa continues to have setbacks and is regularly admitted to hospital for brain operations or to control her seizures. In spite of this, we feel Elsa has huge potential and is overall an extremely happy and smiley baby. She loves sitting on my lap while she tries to play her favourite toy - the piano.
I myself have been through gruelling treatment including chemotherapy, radiation, targeted therapies and immunotherapies. I've had emergency back surgery to remove a tumour on my spine to prevent paralysis and had drainage pumps coming out of my abdomen. While all of this has been exhausting, Elsa’s fighting spirit has been an inspiration to remain strong and optimistic and to never give up so I can be here for Elsa and my husband Simon. I've showered love and patience on Elsa at all times, finding ways to engage her (given her limited communication) and help her develop to her full potential. We truly bring out the best in each other.
All these treatments have come at a cost financially. Health insurance providers are refusing to cover either myself or Elsa and none of my expensive treatments are provided through the NHS so it has been better value staying in Singapore. Nevertheless, years of high medical costs for both Elsa and myself has taken its toll. We've depleted our savings even after Simon has sold his property. Simon now spends the majority of his time caring for both of us, and whilst I am unable to work, our income at best covers living costs.
I'm now in a critical condition again and need additional funding for life saving treatment. We are also seeking funding for Elsa’s hospitalisations and planned operations for her brain shunts. This may reduce her seizures and will prevent hydrocephalus which can cause further brain damage and at worst is a life-threatening condition.
Those of you who know me will know I am a person who embraces life, through my love for Simon, through all my close relationships, my passion for yoga and competing in running and triathlon events. You will also know of my love for music, socialising, fun and my work. Due to my cancer, I am unable to continue with the more active things in my life for now, but since Elsa was born I now have an even greater passion to look after her and help her blossom into the beautiful little girl we know she can be. With your help we hope to make this dream a reality.
We thank you for taking the time to read our story. If you are able to help in any way, however small or large, we would be eternally grateful.
Juliet, Simon and baby Elsa xxx
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