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LoveQuiltsUK - Daisy W's quilt

Daisy W's quilt    (Quilt Closed)

Born:2019
Illness: Non ketotic-hyperglycinemia.

Theme: Mermaids

Date opened: 7th Jan 2023
Date closed: 8th Jan 2023
Deadline: 26th May 2023

Photo of Daisy W

Child Interests

Daisy loves flashing bright lights and bright coloured tv programmes. She also loved going to the hydro pool and music therapy at our local hospice.
Her favourite colours are lilac and pink.


Biography

Daisy was born to myself Toni & father Adam in 2019 at 40+6 weeks after an uneventful pregnancy by a forceps delivery. Daisy Initially appeared to be a healthy baby passing all her newborn screenings and was able to go home once I was discharged.

The next morning I raised my concerns to the doctors as Daisy appeared very sleepy, was feeding poorly and didn’t cry! Later on that day Daisy was transferred to the neonatal intensive care unit. It was here where our nightmare began.

Over the next few days Daisy deteriorated, was feeding poorly and having difficulties breathing on her own. After trying different breathing aids it was decided Daisy needed to be ventilated. She was moved to the most intensive care room and ventilated for almost 3 days.

On Day 9 (diagnosis day) Daisy was doing much better, she was now completely breathing on her own and we thought she was getting better. Little did we know the next conversation with the doctors was about to change our life forever.

Daisy was diagnosed with a rare metabolic condition non-ketotic hyperglycinemia. 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.

There is no cure however, there is research underway looking at gene replacement therapy, which may in the future hopefully save our babies life and prevent any parents in the future having to go through the nightmare and the heartache we have.
We have raised over £25,000 plus gift aid towards research for gene therapy.

Daisy is now 3.5 years old and still suffers every day with the effects of NKH and the damage it has caused to her brain. However, she is such a strong resilient and beautiful girl who fights everyday to prove everyone wrong. Next year she will hopefully start school, something we never dreamed of and we hope she will thrive even more there.



Patterns


1.Bothy Threads kit. Slightly Dotty Mermaids.Stitcher: Nicky, Mytchett, UK
In Progress

2.Princess mermaid with purple hairStitcher: Ellie, London, UK
In Progress

3.Little Mermaid Ocean Princess by Cross stitch kits Alla Will change colours slightlyStitcher: Pru, Les Adjots, France
In Progress
https://www.etsy.com/listing/1003584163/little-mer...

4.Mermaid as done before for Daisy G and Maisie MStitcher: Gemma Boreham, Suffolk, UK
In Progress

5.Durene Jones Mermaid Mermaid with Fish, will stitch with fave colours as stitched previously for Kaila BStitcher: Sandra, Shefford, England
In Progress

6.Soda stitch Princess mermaid with lantern Stitcher: Jan G, Hull, UK
In Progress

7.Etsy Mermaid Cross Stitch Pattern,Under the sea Mermaid Princess The Little Mermaid Modern pdf Download,SO-OP3226 'A Legend of The Blue Sea'Stitcher: Sharon, Doncaster, UK
In Progress

8.Whimsical cross stitch by Cari Buziak Mermaid but will add some fish and seaweed or a border as mermaid is 4.7" squareStitcher: Marilyn Foyle, Biggleswade, UK
In Progress

9.Etsy Shop by Mariya Mermaid Stitcher: Jenny, Rushden, UK
In Progress

10.Mermaid by Clangie Designs - Etsy Mermaid with seaweed and seahorse, fish and shells.Stitcher: Sally, Hull, UK
In Progress

11.EvasdesignsBg etsy shop Mermaid in a shell shaped bath Stitcher: Paula Dewar, Glasgow, Scotland
In Progress

12.Label Stitcher: CGH, Edinburgh, Scotland
In Progress


Squares received

None yet. (Quilt opened on 7th Jan 2023)

Card

Card for Daisy W
Stitched by: Sandra

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