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LoveQuiltsUK - Charlie J's quilt

Charlie J's quilt    (Quilt Closed)

Illness: Non-Ketotic Hyperglycinemia (glycine encephalopathy)

Theme: Jungle animals

Date opened: 21st Jul 2021
Date closed: 25th Jul 2021
Deadline: 26th Nov 2021

Photo of Charlie J

Theme details

Jungle animals - Animals such as lions, tigers, giraffe, monkeys, meerkats are favourites. A penguin on the label if possible. Cute or realistic is OK, but not too childish as he is nearly 10. Prefer not geomatric/outline

Child Interests

His favourite colours I believe are green, blue and anything bright.


Charlie was born by emergency caesarean section as his heart was erratic and then very slow. He had the cord tightly around his neck and was born coma state. He was intubated quickly as he was making no attempts to breathe.

It was initially thought to be down to birth stress and trauma and in a few days he would wake up but he didn't. Day four they ran a 72 hour eeg. He had no brain responses apart from seizure activity and it was felt it would be kinder to let Charlie pass away. We were against doing this, so I reached out on Facebook to the NKH community and we pushed for the recommended medicines. Once the medications were administered, within a week Charlie was awake and had an MRI and EEG that showed slow brain pattern. He demand breast fed, we learned to administer meds and then went home.
At four months Charlie had his first proper seizure that wasn't myoclonic jerks, so started meds for that. Age 2-3 Charlie had a horrible year, of seizures and health ups and downs, constantly catching everything,. He has four siblings and as much as we tried to avoid it he had a lot of hospital admissions. During that time he was very poorly, they told us he was dying and sadly he lost the majority of his eating skills. Initially had a peg fitted aged two, and changed to a button aged 3.
Charlie enjoys school, and loves the staff and all his friends. He is non-verbal, but that doesn't stop him communicating his presence. He has the most wonderful smile that lights up a room. Going to school was huge for us as Charlie is life-limited and wasn't expected to live six months.
He recently turned 9, aside from covid meaning he couldn't go to school since February 2020 and get out and about, his condition has also progressed. He had 4 critical care admissions to TY Hafan Hospice last year and one this year. Charlie was in a lot of pain, and is now on morphine patches for hip dislocation, which can't be repaired as he is too high risk. He has scoliosis and developed tardive dyskinesia/dystonia, which we are currently trying to control. His movements are distressing to him ,some days more than others. He can look quite still but the muscles in his legs and arms feel like they are rolling and popping. His progression has also massively affected his sleep because his brain isn't being sent a signal to shut down, so can stay awake for 30-70 plus hours at a time. He then sleeps for a couple of days solidly to catch up.
With all that he has to cope with, on a good and awake day Charlie is the happiest child. He loves a good chat and a Disney movie, will laugh at the most inappropriate things and is a joy to be with. Everyone who meets him loves Charlie.


1.Dmc tiger patternStitcher: Jodie Balaam, Lawshall, England

2.Own design of a giraffe which I have used before. Stitcher: Pat Brown, Warminster, England
In Progress

3.Tigers Face by Axebe on EtsyStitcher: Val Gilbert, Coningsby , UK
In Progress

4.Jayne Newley Mayhew Cross stitch safari book MeerkatsStitcher: Jenny, Rushden, UK
In Progress

5.Endangered Young'uns The Golden Lion TamarinStitcher: Rosemary Binnie, Macclesfield, UK
In Progress

6.POINT DE MARQUE 5.10 - PATTERN Selection of animalsStitcher: Emma Robson, Doncaster, England
In Progress

7.DMC Leopard face. I'll use regular cotton threads.Stitcher: Eleanor DB, Croydon, UK
In Progress

8.HMcrossStitch on Etsy Lion cross stitch pattern PDF Lions head portrait style Stitcher: Helen Irwin, Hull, UK
In Progress

9.Jayne Newley cross stitch animal collection book Lioness and cubsStitcher: Jannine Hall, Stourbridge, England
In Progress

10.CrossStitcher August 2000 Majestic jungle cat (tiger head)Stitcher: Christine Mennie, Aberdeen, UK
In Progress

11.My design MonkeyStitcher: Sarah Jackson-Cartledge, Durham, UK
In Progress

12.Label Stitcher: Miss Debbie Elkington, Boston, Lincs, UK
In Progress

Squares received

Cross stitch square for Charlie J's quilt
Stitched by: Jodie Balaam
Submitted: Jul 2021

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