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This is our Poppy. She was born with a condition called Lissencephaly, the folds of her brain did not develop as expected. When we were given this diagnosis we were made aware that this would impact her life significantly, she would have severe physical and developmental disabilities and her life expectancy would be shortened - the average life expectancy for a child with severe Lissencephaly is 10 years.

When she was born Poppy did better than expected and was able to stay with us and her twin brother for her first 6 days. She then spent a few weeks in HDU to help with her feeding but her early days were relatively straightforward. At 4 weeks old she was diagnosed with significant hearing loss - we approached the news with enthusiasm, she had SOME hearing. She was fitted with a hearing aid and she joined the noisy world of her brother and sister. 3 months of relative calm followed.

In mid-December she was faced with the first significant symptom of her condition. She started having infantile spasms, treatment started immediately but this was a balancing act, medications that made her so sleepy she forgot how to feed, or made her hungry so she could feed again but challenged her immune system. She had an NG tube fitted so that we could get milk in her but she started vomiting after every feed. She slept for 20+ hours a day. Her spasms got worse and they started to distress her. One night I sat holding her for 45 minutes during a cluster of spasms and she howled the whole time, there was nothing I could do to comfort her. It was at this point that we started conversations with Poppy's paediatrician about her quality of life and we began putting together an advanced care plan - a document which would allow us, and doctors, to make decisions about her treatment to put her comfort first.

In early March the second major symptom of Poppy's condition presented itself,  respiratory difficulties. She caught a bad cold and her little body couldn't cope with the associated cough. A trip to A&E, 4 nights on a Children's ward and she improved enough to come home. It was 10 days before her second admission, this time 5 nights - then 7 days before she was so poorly we were taken to hospital in an ambulance for the final time. This time her condition didn't improve. We realised we may not have much time left with our Poppy. The strain of having our family split between hospital, me staying with Poppy, and home, Scott with Rupert and Bea, was making everything so much more difficult. We made the decision, with the support of doctors, to move to Helen House Hospice where Poppy could be given the best care to keep her comfortable and our family could be together.

We had been told wonderful things about Helen House but the reality was more than we could have ever hoped for. When we arrived we were met by the kindest people, a room had been prepared for Poppy with an adjacent room made up for our use. As well as this a 2 bedroom family flat was available to us so that we could all stay together. A weight lifted from my shoulders - we could all be together and Poppy could be looked after. Her bed was next to mine, I didn't have to be even a metre away from her over night. The beautiful gardens were in full bloom (I think we have Poppy to thank for the gorgeous weather), there were endless things to keep Bea and Rupert entertained, we were provided with all meals, had photos taken of the 5 of us under a tree full of blossom, went swimming together with Poppy, despite her need for oxygen - the staff were always able to find a way! 

On Friday 20th April Poppy took a turn for the worse. The nurses and doctors made it their priority to keep her comfortable and to provide Scott and I no distractions from cuddling her, showing her how loved she was. Thanks to the facilities and staff of Helen House we were able to hold her as she took her last peaceful breaths, with her brother and sister close by. Since she left us they have continued to provide support to our family.

To be allowed that time was invaluable. Those four precious days, free from the responsibility of being Poppy's carer, being able to focus on being Poppy's mummy and making memories that we will treasure forever.

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