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LoveQuiltsUK - Jamie's quilt

Jamie's quilt    (Quilt Completed)

Born:2009
Illness: Bohring-Opitz Syndrome

Theme: Stars & Rainbows

Quilt delivered: 20th Jan 2023
Photo of Jamie

Thank you

Coming soon...



Finished photos

Coming soon...


Quilted by: Alison and Janine

Individual squares

Cross stitch square for Jamie's quilt
Stitched by: Ann (+)
Submitted: Aug 2022

Cross stitch square for Jamie's quilt
Stitched by: C McDonald (+)
Submitted: Sep 2022

Cross stitch square for Jamie's quilt
Stitched by: Eileen (+)
Submitted: Oct 2022

Cross stitch square for Jamie's quilt
Stitched by: Elaine Dixon (+)
Submitted: Jul 2022

Cross stitch square for Jamie's quilt
Stitched by: Emma Edwards (+)
Submitted: Jun 2020

Cross stitch square for Jamie's quilt
Stitched by: Emma Robson (+)
Submitted: Oct 2022

Cross stitch square for Jamie's quilt
Stitched by: Emma Swift (+)
Submitted: Oct 2022

Cross stitch square for Jamie's quilt
Stitched by: Jodie Balaam (+)
Submitted: Jul 2022

Cross stitch square for Jamie's quilt
Stitched by: Kaz Bowen (+)
Submitted: Aug 2022

Cross stitch square for Jamie's quilt
Stitched by: Nicola (+)
Submitted: Jul 2022

Cross stitch square for Jamie's quilt
Stitched by: Pat Brown (+)
Submitted: Sep 2022

Cross stitch square for Jamie's quilt
Stitched by: Sharon (+)
Submitted: Sep 2022


Card

Card for Jamie
Stitched by: Marilyn Foyle

Biography

Jamie was born at term following a normal pregnancy. He didn't look like I'd imagined, he was A LOT smaller than my first born & his immediate oxygen requirements gave cause for concern. He didn't come home for 2 weeks while we tried to establish a feeding regime and feeding difficulties continued in the following months at home until he had to be taken back into hospital for an NG tube; he was failing to thrive.

Feeding issues continued for many years and several different means were tried until a GJ tube & fundoplication were were done. Jamie has had many hospital admissions, particularly in the first 6 or 7 years of his life. Besides surgery to place his feeding tubes, he has had his tonsils & adenoids removed and open heart surgery to repair an ASD. Serious infections have also led to hospital admissions, 2 of which resulted in respiratory arrest and another (when he had sepsis) leading to full cardiorespiratory arrest. At this point Jamie went blind, deaf & his liver failed - it is beyond miraculous that he survived!

There are roughly just 250 children worldwide with a diagnosis of Bohring-Opitz Syndrome (BOS); Jamie is the only one in Ireland (North & South) but true friendships have been formed online with other BOS families.

Jamie can't walk or talk, he has epilepsy, scoliosis, congenital heart disease, dystonia, compromised hearing & vision, obstructive sleep apnoea, gastroesophageal reflux disease & he's the size of a toddler. He is the strongest, bravest, most loving little boy. He goes to school every day and to NI Children's Hospice for respite. We love him beyond measure & we wouldn't change him for the world x


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