Alfie T's quilt    (Quilt Completed)

Thank you

Just to let you know the quilt has arrived safe and sound. Alfie absolutely loves it, we all love it. Thank you so much.

Finished photos

Individual squares

Card

Stitched by: Deborah Desmond Clarke

Biography

Alfie was born 10 weeks early. From the start he had breathing problems and spent several days in PICU. When he was stable were were able to go on the ward, so the hospital staff could keep an eye on him. Every day he got better and we eventually were let home.

But a few weeks later he took a turn for the worse, and ended up back in hospital. Alfie was born with Pierre Robin sequence and part of that is having a small lower jaw which then means the tongue flops back and obstructs the airway. This was happening to Alfie so the doctors placed a nasal pharyngeal airway in.

As time went by and he had surgery to repair his cleft palate, things started to look brighter and he was able to come off oxygen and have more feeds via a bottle rather than a NG tube.

In 2017 Alfie was struggling to breathe yet again. The doctors tried a few things but none of them worked. The only thing that they could do is a lower jaw distraction and a tracheostomy. Alfie had metal bars in his face for around 4 months and everyday we had to turn the screws, that was making his jaw come forward. Alfie still has the tracheostomy and gastrostomy. We have found out in the last couple of years Alfie has a dangerous swallow so he can’t have any fluids orally and his foods have to be puréed. He also still has his tracheostomy as he has a severe floppy airway. Every now and again we go back to hospital to see how his airway is. He has missed so much school due to operations or illness.

Alfie is also non verbal, and doesn’t have a lot of communication. We are trying to find what method best suits Alfie.