Love Quilts on Facebook

Join us
on Facebook

Love Quilts on Twitter

Follow us
on Twitter

RSS
LoveQuiltsUK - Deon E's quilt

Deon E's quilt    (Quilt currently being assembled)

Born:2015
Illness: Hypoplastic Left Heart Syndrome (HLHS)

Theme: Vehicles

Quilt currently being assembled
Photo of Deon E

Theme details

Vehicles - trains tractors trucks helicopter boats



Biography

Deon now aged 9 was diagnosed antenatally at our 20 week scan with Hypoplastic Left Heart syndrome, a congenital heart defect where the left side of the heart does not develop. This meant Deon would not survive after birth without intervention. We were given 3 options - 1. continue with pregnancy and do nothing after birth where Deon would have passed away within 2 weeks; 2. terminate the pregnancy or 3.surgery which would consist of 3 open heart surgeries which were not a fix or cure but would prolong life expectancy which we were told would be, after surgeries, late teens/ early twenties. Surgeries would be high risk and no guarantee of survival. We were told that Deon’s chance of even surviving birth were extremely low that he would be born blue lacking oxygen.

When Deon was born he was a fighter from the start, so we decided to go down the surgical route. His first open heart surgery was at 4 days old but complications followed with infection and low oxygen levels. We remained in hospital for the first 5 months of Deon`s life where we lived at hospital accommodation with our daughter Mia then aged 3 who attended nursery there. During this time Deon had 5 other smaller surgeries, and was solely tube fed as he was too tired to breastfeed or take a bottle. He was not doing well and the only option was to bring his 2nd surgery forward - this is usually performed around 6 months of age, but was undertaken at just 10 weeks old.

Deon seemed to recover well at first but remained in hospital, moving from a ward to high dependency units and children’s intensive care. At 14 weeks of age Deon suffered a stroke which we were told may affect his left side, speech and mobility, which it did. Deon finally improved and was discharged for home just after 5 months old. We left hospital with basic life saving training, a lot of medication, injections and feeding pump.

Deon’s stroke has left him with left sided hemiplegia, which has affected his walking. He wears an AFO, shoe raise and does daily physiotherapy exercises. His left arm is weakened but has improved over the years. Deon’s speech and communication suffered too. He used Makaton and gestures to communicate with us for many years but slowly he has used this less and less and uses words more, and with speech therapy he is making improvements every day.

We have had ups and downs over the years, hospital stays and big scares, but our son Deon is our hero. He has overcome so much in such a short time. He is a fighter, stubborn and determined. He manages school with a 1:1 support, and they find ways to include him in everything. He has an amazing sister Mia who supports him and cares for him so much, she is a truly amazing sister, and Deon adores her.

Although our lives will never be ‘normal’ we have accepted our normal. We try to provide Deon with life experiences and celebrate every milestone no matter how small, and don’t take anything for granted, make memories and make every day count. Every day we have with Deon is a blessing.



Patterns


1.LQ files, monster truck by Beth Filmer. Monster truckStitcher: Gabriele Pearson, Cromarty, UK
Received

2.On the road and in the air by climbing goat designs will stitch vehicles in favourite colours. Two trucks and helicopter Stitcher: Sarah, St. Albans, UK
Received

3.LQ file LQ file, Monster Truck crushing by Beth FilmerStitcher: Fiona Lema, Greenlaw, UK
Received

4.Stitch pics chart from 1998 New Holland tractor stitched in blueStitcher: Pauline, Broughton, UK
Received

5.Old Cross Stitch Collection Magazine BR Rebuilt Merchant Navy Class 4-6-2 Train LMSR Princess Coronation Class 4-6-2 TrainStitcher: Sandra, Shefford, England
Received

6.Boats by Cross Stitch TR on Etsy - Fishing boats in a harbourStitcher: Kay, Doncaster, UK
Received

7.LQ files by Ellie Dee AH - 64 apache helicopterStitcher: Ruth Horn, Co Durham, UK
Received

8.Own design of boat or tractorStitcher: Jodie Balaam, Lawshall, England
Received

9.LQ files Blue Scottish Train by ChristineStitcher: Val Gilbert, Coningsby , UK
Received

10.British rail class 378 train from filesStitcher: Gail, Lochgelly, Scotland
Received

11.Stitcher: Janet T, South Wales, UK
Received

12.Label Stitcher: Leanda Vickers, Oldham , England
Received


Squares received

Cross stitch square for Deon E's quilt
Stitched by: Leanda Vickers
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Gabriele Pearson
Submitted: Nov 2024

Cross stitch square for Deon E's quilt
Stitched by: Sarah
Submitted: Nov 2024

Cross stitch square for Deon E's quilt
Stitched by: Fiona Lema
Submitted: Nov 2024

Cross stitch square for Deon E's quilt
Stitched by: Pauline
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Sandra
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Kay
Submitted: Oct 2024

Cross stitch square for Deon E's quilt
Stitched by: Ruth Horn
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Jodie Balaam
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Val Gilbert
Submitted: Sep 2024

Cross stitch square for Deon E's quilt
Stitched by: Gail
Submitted: Nov 2024

Cross stitch square for Deon E's quilt
Stitched by: Janet T
Submitted: Sep 2024


Card

Card for Deon E
Stitched by: Anne Berg Gjolberg

Back to home