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I fell pregnant September 2016, Aliza-May Faith Norton was born a week late in June 2017. The whole of my pregnancy we did not know about our daughter having Edwards.
We stayed/lived in SCBU for the first week and then found out her diagnosis, they told us we have 3 weeks with her and it probably won’t be any longer. So we made a wish list, we moved ourselves to our living room as we didn’t want to leave her and made it easier for us. Within the 3rd week we went away with all of our families to Devon, we were there for a week and went to the beach, she put her feet in the sand, had a very early Christmas, first birthday, first family meal, party.

We came home and we didn’t know what to do next as she was almost 4 weeks old. We had a lot to handle with learning all the different things such as her syndrome (as every child is different), her feeding tube changes and her medications.
Anyway Aliza-May exceeded everyone’s expectations. We got through both our birthdays, her first Christmas, photo shoot, firework night, family meals, Father’s Day, Mother’s Day, i made my own baby group where she made friends, she had a weekend away to the country and so much more.
Helen & Douglas house helped us out massively as they helped show us life can be normal it just needs to be ventured a different way. They showed us how to feed her, they let us swim with her and it gave us time to spend some time with each other.
Throughout Aliza-Mays life we were very lucky as she was a healthy baby, regardless of the Edwards syndrome. She was just like any other baby, she did have talipes as well but she was beautiful. She was always smiling and we even got to experience her first laugh.
This year in March she went into hospital with a chest infection, we went to Helen house to have some help just in case but we had the most amazing week with her. Unbeknownst to us this would be her at her healthiest for the last time. But we painted, swam, sang, played for hours and cuddled. Unfortunately, we weren’t home long until she went back into hospital, she came home for a day and a half on oxygen then an ambulance had to be called.
To cut a long story short, Aliza-May was then there for 2 weeks, throughout this we heard so many different things and then it came to light her lungs were no longer strong enough to cope on their own. The nurses on the ward then became our guardian angels; they organised a very early first birthday party for her on Saturday 28th April. All family and friends came to celebrate her life so far, later in the afternoon we got told the news no parent wants to hear (it’s rare they normally do tell you as they don’t know until ‘it’s’ here) she was going to die.
Sunday came and our family had their time with her. We had her to ourselves from 1pm, we cradelled her, sang all her favourite songs, talked to her like we normally would, we reminisced and then finally said our goodbyes. 7:15pm on the 29th April was the day our beautiful little girl grew her angel wings and we died the same time she did.
Following this the nurses, doctors and funeral home were incredible. Her funeral was on the 11th May, it was as beautiful as a day like that could be. We still till this day get support from everyone. My advice would be talk about your child as much as you please and cherish every single moment you have with them. I’m not saying don’t moan because they are like every other child but just remember you’ve been blessed.
Yours sincerely,

Created: 22/01/2019 14:17

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