An inspiring Nelson woman with a rare metabolic illness is raising money for the hospital which saved her life.
Maryam Ahmed (21) is braving the shave in aid of Royal Manchester Children’s Hospital where she has received care for 18 years during her battle with Glycogen Storage Disorder Type 1a.
Determined not to let it beat her, the former Nelson and Colne College student decided to turn her attention towards helping others with the same condition. So when she began to lose her hair as a result of her treatment, the “happy-go-lucky” woman was determined to stay strong.
“I wanted to use this negative and turn it into a positive so I decided, why not earn money and donate it to the hospital which had treated me with so much care?”
Maryam’s devastating diagnosis came at the age of just five and a half months.
“The doctors thought I had cancer when my mum first took me in, but after a small mere operation [called a] ‘liver biopsy’, they found out it was GSD Type 1a,” she said.
This inherited disorder is caused by the buildup of a complex sugar called glycogen in the body’s cells. Its accumulation in certain organs and tissues, especially the liver, kidneys, and small intestines, impairs their ability to function normally.
“I have been on a peg feed all my life, overnight. This is to prevent me going hypoglycaemic and slipping into a coma,” Maryam said.
“Ensuring I eat every 90 minutes everyday to maintain my blood sugars can sometimes get tough.”
Then, at age 19, her condition took a turn for the worse when the functioning levels of her kidneys plummeted from 74% to 30%.
“At this point I was told by my consultant that if I decline treatment I wouldn’t be around more than a year,” she said.
She returned to education the following year but was soon forced to drop out when she was admitted to hospital after vomiting blood and experiencing severe nosebleeds.
And then, events took a near-fatal turn when she was told she had only 5% kidney function and needed emergency dialysis.
Today, Maryam is on a transplant list for a new liver and kidney and returns to hospital three times a week for vital treatment.
“My second home is the hospital,” she said. “It’s been a long journey of 21 years and still counting but I know it’ll all be worth it in the end.”
In fact, the care she has received throughout her life has inspired Maryam to dream of becoming a nurse. But it’s also the support of her family which has infused her with such strength and optimism.
“Looking at me, you’d never think I have an illness. The only person who understands it is myself and my immediate family because they have been by my side during the whole process and with their support I’m getting through everything,” she said.
And there’s one woman in particular who shines brightly in her life.
“The credit is due to my mum, who has been there from day one, and always encouraged my every decision and backed me 100%. I still remember all the sleepless nights and days spent in hospital with her.
“Without her by my side, I wouldn’t even be here today.”
To make a donation and help Maryam hit her target, please visit https://www.justgiving.com/fund-raising/mazzahmed or text MAHM84 £amount to 70070. Texts are free.