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LoveQuiltsUK - Eleni S's quilt

Eleni S's quilt    (Quilt Closed)

Illness: Non ketotic hyperglycinemia

Theme: Bumble bees/flowers

Date opened: 9th Nov 2022
Date closed: 13th Nov 2022
Deadline: 26th Mar 2023

Photo of Eleni S

Theme details

Bumble bees/flowers - Bumble bees, and flowers with bumble bees. OK to have scenes with bumble bees in, eg garden scenes

Child Interests

Bumble bees and flowers, pinks purples greens. Wildflower meadow colours. Eleni loves pretty lights and listening to her audio stories.


Our daughter, Eleni, was born in 2019. It was an uneventful pregnancy and the birth was a straight forward elective csection. 24 hours after we were sent home. Even though we thought it was a bit quick to be going home after major surgery, Eleni had all her newborn checks and passed them with flying colours so we were happy to leave.

At 3 days old we were concerned about Eleni, she was becoming floppy and feeding less. Luckily the midwife came that morning and advised we took her in as she was probably just dehydrated and blood sugars may be low due to lack of milk.

We got to Northampton General Hospital and I was sat holding and trying to feed Eleni when a doctor walked past and stopped in his tracks and ran over, he took her off my lap, put her on the bed and pressed the emergency button. The next thing we know she had a mask over her mouth and is being bagged to help her breathe. Her respiratory rate was 4 breaths per minute, when a baby should be at around 30-50.

Eleni was intubated and put on a ventilator as she stopped breathing on her own, and due to this we had to be transferred to Leicester Royal Infirmary’s children's intensive care. Test after test doctors were struggling to find what was wrong. After blood tests, MRI, lumbar punctures and EEGS Eleni’s diagnosis was clear. She had a rare metabolic disorder which was life limiting. We were advised to withdraw the life support as she just wasn’t breathing on her own and wouldn’t without the help either. So we made the tough decision to let our baby girl go.

The day came and all her family was surrounding her before we took the tube out. Everyone left to sit in the family room to wait for the inevitable, but Eleni had different Ideas. The tube came out and we CRIED and SOBBED, then Neil and I looked at each other, she was breathing, it was getting stronger by the second. Everyone was gobsmacked. Despite this revelation though we were still sent to a hospice for end of life care in which we spent 4 days before taking our amazing, ferocious, fighter of a daughter home.

Eleni was diagnosed with a rare metabolic condition Non ketotic Hyperglycinemia (NKH for short) NKH affects 1 child in every 76,000 born there are approximately 50 kids in the UK and 500 worldwide living with this condition.

Sadly the mortality rate for children born with NKH is high and many die before they make it out of toddlerhood. Those that survive are often extremely disabled with uncontrollable seizures.

Eleni is now 3 and is thriving as much as she can. She is beautiful and sassy and just has a pure beautiful soul !


1.CS Patterns Shop from Etsy. Bumble Bee within a heart of flowers.Stitcher: Nicky, Mytchett, UK
In Progress

2.Honey bee and purple flowers by VladaXstitch on Etsy Stitcher: Val Gilbert, Coningsby , UK

3.Https:// Bee woth flowers in a circle from oh my stitches shopStitcher: Jodie Balaam, Lawshall, England

4.DMC Through the MeadowStitcher: Eileen, Newcastle, UK
In Progress

5.From Oh my stitches shop on ETSY. Bees on a sunflower - from ETSYStitcher: Kerry, Aldershot, UK
Received Bumble BeeStitcher: Rosemary Binnie, Macclesfield, UK
In Progress

7.Les coeurs d’lsa Tome 3 Heart with Bees and BeehiveStitcher: Sandra, Shefford, England

8.CrossStitcher mag July 2002 Daisies and bees Stitcher: Julie Robbins, Bromsgrove , UK
In Progress

9.Etsy Pattern by Fiona Baker Design Sunflower with bees and honeycomb pattern background Stitcher: Angie, Belper, UK
In Progress

10.Tribal bumble bee White Willow Stitching tribal bee patternStitcher: Claire Dickie, Aldershot, England
In Progress


12.Label Stitcher: Jessica, Cambridge, ON, Canada
In Progress

Squares received

Cross stitch square for Eleni S's quilt
Stitched by: Val Gilbert
Submitted: Jan 2023

Cross stitch square for Eleni S's quilt
Stitched by: Jodie Balaam
Submitted: Nov 2022

Cross stitch square for Eleni S's quilt
Stitched by: Kerry
Submitted: Dec 2022

Cross stitch square for Eleni S's quilt
Stitched by: Sandra
Submitted: Dec 2022


Card for Eleni S
Stitched by: Sandra

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