Samuel M's quilt    (Quilt Completed)

Thank you

Sending huge huge thanks for Samuel's amazing quilt we safely received yesterday. We are absolutely blown away by the skill and beauty of it. Sam was absolutely amazed and closely inspected every square personally - all have been enthusiastically approved!! We was super excited and wanted to lay down on it straight away and play with his toys. It lets him play on the floor in a slightly more comfortable spot. We are overwhelmed at the prospect that so many kind people helped create this quilt for Sam, and it has touched our hearts and cannot express our deepest gratitude to you all.

Finished photos

Individual squares

Card

Stitched by: Nicola Bailey

Biography

Samuel was born just before the Covid 19 pandemic hit, but all seemed well. We bunkered down during the lockdowns together when he began to start choking on milk and purees, and stopped moving his legs and became floppy. His health visitor fast tracked him to see a local paediatrician, then a neuromuscular specialist. Then began the blood tests, examinations and physical assessments. Shortly after, Sam was sent into hospital for losing weight when they spotted his oversized and thick heart on a chest x-ray which was the last puzzle piece they needed. He was then diagnosed with Infantile Pompe Disease, a very rare genetic muscle wasting condition which proves quickly fatal without the fortnightly Enzyme Replacement Therapy. There sadly is no cure.

We were beautifully looked after by Birmingham Children’s Hospital for three months, though doctors were not expecting him to go home as he was in cardiac and respiratory failure, and his diagnosis was one of the latest they’d seen for Infantile Pompe. Yet with supplementary oxygen, a gastrostomy, a port-a-cath, suction machines, nebulisers and a non-invasive ventilator for night time, we managed to get home via a wonderful step down to Acorns Hospice to enjoy what we were told was going to be our last few months with Sam. Two years on, and a new Enzyme Replacement Treatment later, Sam is building up strength we never dreamt of! He needs help to move around and has a great wheelchair, but can wiggle around on the floor and play with his trains. He is nonverbal yet is becoming much louder! He has a lot of appointments to monitor his health and progress, with consultants, physiotherapists, dieticians, occupational therapists (the list is very long!) and his fortnightly treatment at home (which is a brain buster 6 hours long!) we have a busy life. Even busier now that Sam has started a wonderful nursery specialising with SEND plus a local special needs school, which we never thought would be in his future. We never truly will know how long the treatment will help manage his Pompe for, so we try and make everyday as wonderful and as exciting as we can.