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LISTEN "We just miss you so much"

dersingham family raising money for EACH

Published by Chris Craddock at 5:21am 16th May 2019. (Updated at 5:23am 16th May 2019)

"We just love you so much.... and we just miss you so much."

The heartbreaking message from a Dersingham mum to her little baby girl who should still be here with her.

But Mercedes was born with a rare development disorder called Smith-Lemli-Opitz syndrome.

dersingham family raising money for EACH
Karen with Mercedes

 

Parents Karyn and Daniel Hardy were told also told that her vital organs were shutting down as well.

So Mercedes staying in the neonatal intensive care unit of Norfolk & Norwich University Hospital after she was born in January 2018.

The little girl had a cleft lip and palate, which combined with the syndrome meant Mercedes couldn't breath properly.

dersingham family raising money for EACH
Mercedes enjoyed precious time with her family in comfort thanks to EACH

 

Seven days later - she had passed away.

But through this horrific time - East Anglia's Children's Hospices have supported the family.

The charity continues to help both Karyn and Daniel as well as their other children.

You can hear how much it meant to Karyn:

 

 

The family are now getting ready to take part in King's Lynn's Bubble Rush in The Walks next month.

Karyn said:

"EACH has made a fantastic and positive impact on our lives. When any positives have been hard to find, the support has been amazing. Both Alexus and Leon really enjoy going to the group sessions. Alexus told us she enjoys the group sessions because the other children who attend understand how she feels and that they have all lost a brother or sister, too. If we didn't have EACH, I don't think we'd be able to carry on with our lives. It'd just be one depressive day after another, with no-one to talk to and no support. We'd not know who to turn to or where to get help, and feel very alone and isolated. I believe I wouldn't want to leave the house or know how to carry on with a normal life.

"EACH gave us the chance to spend a few days with Mercedes after her passing and provided us with Mercedes' handprint cast, among other things. We also got the chance to go to family events at [EACH's hospice in] Quidenham and meet other families who've gone through the same situation. Andy from EACH produced the hand cast and prints. They're fantastic and a great memory we'll be able to keep forever. We got some canvas prints of our hands with Mercedes' as well, so we're joined as a family in the canvas forever. All these memories will be with us forever and never leave us."

Find out more about the Bubble Rush on EACH's website.

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