Together for Short Lives
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I was surrounded with mums and their new babies. But I was alone.

“We knew something was wrong when the trainee sonographer asked for her superior to have a look.”

At 20 weeks, Emily and Paul were told that their baby had club foot. “We didn’t know if it was isolated or was linked to something else.”

“I went to the toilet and cried. I was hiding as I wanted to cry without my husband seeing. I was scared, worried and petrified.”

Other tests soon came back normal. “It was an immense sense of relief that the club foot was isolated. But this didn’t turn out to be the case. We weren’t prepared for what was going to come.”

Before everything changed

“I remember the day before Amelia was born so vividly. My dad drove me to the hospital the night before to have my pre-op. I was so ready to have my baby. I was relaxed and easy going about the birth as I had done it all before but I was scared about her feet. But when I look back now, I entered that hospital as someone I no longer recognise. My life and our life as a family, was about to change completely in the next 3 hours.”

Welcome baby Amelia

Amelia was born on 29 November at 9.21am. The next time Emily would see her baby would be at 6pm.

“The happiness of having another child was completely overshadowed with what happened next.”

Emily

When Amelia was born, she didn’t cry and was finding it hard to breathe. Emily was told that Amelia had been born with a cleft palate – something that was completely unexpected and hadn’t been detected in any tests. Then came something Emily will never forget: ‘Your daughter has a cleft palate and because of the club foot we will have to do some genetic testing.’

“I felt like screaming but I couldn’t. I couldn’t understand what was happening to my baby who I hadn’t even seen or held yet.” Amelia was taken to NICU and Emily was left sobbing on the operating table.

“I finally got to hold my little angel that evening at around 6pm. I felt like a fraud. I didn’t understand the lingo or what was going on, or why she was even in this room? She was covered in wired and her mouth was crushed into a mask.”

But Emily couldn’t stay on NICU. “Going back to my room was horrible, all you could hear were women with their babies, I felt so alone.”

Emily was discharged and a few days later, the genetic team came and assessed Amelia and took blood. “Driving to the hospital every day, walking past parents taking their babies home, or seeing pregnant women excited for their scans was so hard to see. At the time I couldn’t see anything but darkness.”

“Amelia’s life was already determined before I even knew I was pregnant.”

Emily

The diagnosis

Amelia was diagnosed with Nemaline Myopathy type 2 when she was 2 and a half weeks old. A rare genetic neuromuscular disorder that affects muscular cells: “To say we were prepared for this was an understatement. I went straight to Amelia after the diagnosis, our nurse was there and held me as I cried. I sat and held Amelia and just sobbed.”

Throughout it all, Amelia’s older sister Penelope was their light in the dark: “Penelope will never understand how much we needed her and how she did so much for us. She is our little ray of sunshine.”

A few days before Christmas, Amelia met her big sister for the first time: “She was amazing and was so gentle and loving. Seeing them both together meant everything to us. We had waited such a long time to be able to do this.”

When I suddenly realised

“After Amelia had been discharged, one evening my mum looked after the girls and I allowed myself to do some research into her condition. It hit me hard, I felt like I was reading Amelia’s discharge papers and write-ups, everything I was reading was Amelia.

“I read on to diagnosis and life expectancy, and there it was: ‘up to two years old.”

 

Emily and Amelia

Our hospice. Our lifeline

For support and help, Amelia was referred to their local hospice, Keech. “Keech are absolutely amazing. At the time I wasn’t sure if a referral to a hospice was the right thing for us, but I couldn’t have been more wrong. They are walking angels. They have helped me so much to become a strong and capable mum. Once we were there, I felt this rush of acceptance.

“Penelope loved every minute and couldn’t believe how many toys were there. She would just follow the other siblings around and it was so lovely to watch. Going to Keech that day for the first time was a big turning point for me, it was from then that I got even more strength to cope and just be with my family. When your child has a life-limiting illness everyday is a struggle. You are met with sheer joy that can suddenly be turned into pain and hurt in a second. But Keech are always on hand.”

Always there

“When you have a child with a life-limiting illness, it’s always with you, this impending sense of loss. What I have learned is we are grieving already, we are grieving the life we thought we were going to have, the life we wanted.

“We have found, as parents to our girls, that we could let the sadness consume us or we could live every day with a positive outlook and see it as another day to be happy. So that’s how we choose to live. In every day. In every moment. Each one cherished with our beloved daughters.”

A vote for Together for Short Lives is a vote for Amelia

Emily and Amelia are fronting our campaign to become Morrisons’ next charity partner.

If you know anybody that works at Morrisons, encourage them to watch Amelia’s video below and vote Together for Short Lives to become their next charity partner.

Every vote for Together for Short Lives is a vote for your local children’s hospice.

And for children like little Amelia.

Family stories