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Sue Manzoor

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I am running the Great Birmingham 10k for Alstrom Syndrome UK because I want to raise awareness of Alstrom syndrome

120 %
£1,230.20
raised of £1,025 target
by 56 supporters
Donate
  • In memory of: Maariyah Iqbal
  • Event: Great Birmingham 10k 2017, 30 Apr 2017

Alstrom Syndrome UK

We offer support, information and hope to families & individuals who are affected

Story

My beautiful, funny, history-loving niece, Maariyah, was born in December 1999.Within days of being born she was rushed to the Children’s hospital in Birmingham where they found she had a problem with her heart. They discovered my tiny niece had a rare illness called Alstom’s syndrome. This is an illness which can affect many parts of the body including the heart, vision, hearing, fibrosis, scoliosis and the children are prone to diabetes. Although my niece’s heart, lungs, spine, hearing and vision were affected this did not stop her one bit, she was always smiling and laughing and she certainly never let anything stand in her way.

Maariyah loved socialising with her family and friends; we had a multitude of family outings from visiting Harry Potter studios to National Trust properties across the country. We are a big extended family and we all wanted to spend time with Maariyah, so you can imagine the convoy of cars that trooped up and down the motorways and country roads. Maariyah also loved the time she spent with the members of Alstrom Syndrome UK the Acorns Children’s Hospice team and her beloved Priestley Smith Specialist School. She had a great love of books and although she couldn’t read the books herself (many children with Alstrom’s syndrome totally lose their sight by their teenage years) she loved to listen to audio books or someone reading her the stories for hours. History was her favourite subject and we would have endless conversations about Henry VIII and his wives, Queen Victoria or some other historical event or person, attending the Battle of Bosworth re-enactment was something she really enjoyed, even if the guns and cannons were a little too loud.
She was wise beyond her years and at the same time had the pure innocence only a child has. She was extremely brave and courageous; the number of hospital visits and cannulas made her an expert in how to get to her blood. Maariyah was full of confidence and would speak her mind in a way that made you laugh and love her at the same time, she was never afraid to remind everyone of the importance of listening to the voices of young people; she would often tell the doctors and nurses how to take her blood or put her cannula in properly, in her own cheeky but knowing way. 

On 2nd December 2016, shortly before her 17th birthday Maariyah sadly left us, her heart had done all the work it could. Anyone who knew or met Maariyah couldn’t help loving her, she was a character who stole your heart, she was our princess and we miss her dearly.

So in Maariyah’s memory we are going to do the Great Birmingham 10K. There are so many fabulous people and causes that helped Maariyah throughout her life, including Birmingham’s Children’s Hospital, Acorn’s Children’s Hospice, The Make a Wish Foundation and Rays of Sunshine that it was difficult to pick a single charity to raise money for. We chose Alstrom’s Syndrome UK in this instance, to help raise the awareness of Maariyah’s rare genetic disorder. Please sponsor us if you can and help us remember Maariyah.

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