Rory T


	Rory T


		Quilt Theme: Wild African Animals

Date Of Birth: August 16th, 2005

Illness: 22q11 Deletion Syndrome also CHD.


	Rory’s Quilt Stitchers: Australian Denise~Jamestown, Janet~Toowoomba, Julie~Beerwah, Marjo~Victoria, Sharon~Casula, Susan~Tasmania, Tania~Werribee. International Cristina~Italy, Debi~USA, Fran~South Africa, Jan~USA. Label Dyah~Picnic Point

		Quilt Assembled By Sue ~ Roma Quilted By Glenda ~ Wandoan

Thank You Message

Thank you to everyone for Rory’s quilt. He was so thrilled. As soon as I put it out on the settee for him, he climbed on it and started patting all the animals. Rory is still unable to talk but he does make animal noises, so he points to the animals and makes their noise. Rory was ill the day he received the quilt and we had to take him to hospital only a few hours after the picture was taken so it couldn’t have arrived at a better time, it really cheered him up.

The whole quilt is just amazing, the amount of work that has gone into it – thank you all so much for doing this for Rory. You made my little boy so very happy, this quilt will be treasured always. xxx

BIOGRAPHY

Rory went into heart failure at six days old. Until then we had no idea there was anything wrong. He had an interrupted aortic arch and multiple VSD's. He was flown to Melbourne at nine days old to have open heart surgery.

While recovering from the surgery we were told Rory had 22Q Deletion. This caused the heart defect. He also has had liver and kidney problems, a low immune system due to an absent thymus gland, low muscle tone, talipes (his right foot), oblique talus (his left foot), and development delay.

He walked at 2 years and ten months. He currently has five words and communicates by sign and has a communication device. He has problems with his palate and can't chew properly and his airways are narrower than should be. He gets a lot of upper and lower respiratory infections which lead to him having breathing difficulties.

Rory is getting stronger and has spent less time in hospital this year than in previous years. We know he will have to have more surgery on his heart in the future. But whatever happens to him, he keeps smiling.