Date dream fulfilled: 27/11/2017
Summary: Maryam’s dream was to have an iPad Pro to keep her distracted and busy whilst she’s at dialysis and attending hospital appointments.
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Maryam is 21 years-old and lives in Lancashire. She has a rare inherited metabolic condition called glycogen storage disease (GSD) type 1. It is a very rare progressive disorder which affects multiple organs in the whole body.
Unfortunately, her illness has resulted in severe liver disorder and kidney failure which now requires Maryam to have dialysis 3 times a week for 4 hours at a time. The doctors have placed her on the kidney and liver transplant list and Maryam is currently awaiting a donor.
As a young person with GSD the main concern is that their blood sugars go very low and for that reason these patients cannot go without eating for relatively short periods of time. In Maryam’s case her fasting tolerance is only 90 minutes which means she has to be eating or drinking something with calories every 90 minutes. Sadly, Maryam also developed very aggressive renal failure which has never been seen in this condition before by the doctor’s at Salford Royal Hospital.
At present Maryam is trying to get used to her added problems which is quite hard because due to her renal failure she is starting to develop anaemia and all the other associated problems which makes her incredibly tired.
This has had a huge impact on her quality of life, resulting in missed education, social activities and affecting her psychological health whereby she doesn’t feel ‘normal’.
Maryam’s dream was to have an iPad Pro to keep her distracted and busy whilst she’s at dialysis and attending hospital appointments which can take all day.
“The last few weeks have been really down with health. The iPad has helped me so much with getting distracted from the actual treatment, and it’s great for things to do such as socialising which I don’t get much time to do. Thank you,” Maryam.