Jamie's quilt    (Quilt Completed)

Thank you

The quilt is amazing! It was actually very emotional as we looked over each square that those wonderful people kindly made and their 'signatures' on each! Just wonderful. We are feeling very grateful for such a unique work of art, it's really very special and simply marvellous! Thank you will never be enough.

Finished photos

Individual squares

Card

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