Syed Jawwad is sharing his journey in a blog ‘Daddy on the Run’ as he gets ready for Sunday’s half marathon for daughter Masuma, two, who needs a heart transplant
A Great North Run fundraiser has paid tribute to the Mirror’s crusade for organ donation as his little girl awaits a heart transplant. Syed Jawwad, 37, a finance manager with St Helens Council, is a complete novice, and struggled to run 2km when he started training.
But he is sharing his journey in a blog called ‘Daddy on the Run’ as he gets ready for Sunday’s half marathon. His daughter Masuma, who has just turned two, is currently in intensive care, supported by a Ventricular Assist Device (VAD), awaiting a life-saving heart transplant.
She suffered a rare reaction to the human form of parvo virus, causing cardiomyopathy. The family has been told she has a 15-20 percent chance of her heart recovering. Syed is supported by his family wife Fozia, 32, and their other two daughters Sakina, six, and Faniya, three. They moved from Bolton, Lancs., to Newcastle so they could see their daughter in hospital.
They can now take her out in the confines of the Freeman Hospital, Newcastle thanks to her VAD device. He said: “I’ve three daughters and little time so I have done my training when Masuma is sleeping.
She was diagnosed in January and moved from Manchester, then Liverpool, then to the Freeman in Newcastle in March, she just turned two on August 31, and has been in hospital for five months now.
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“We knew nothing about organ donation and when we found out about my daughter’s condition, we were quite scared, my wife was devastated. Whenever my little girl took a breath, her heart rate would shoot high.
“We can take Masuma out now thanks to her heart device, we stay within the confines of the hospital. She used to be attached to a big machine, but she can move around thanks to this technology, the device can fit into your pocket.
“Now they have a ‘heart in a box’ device which extends the life of a heart to 24 hours, which is so important for the future. The donation of an organ can make such a difference to people’s lives, and save a life.
“We appreciate everything the Mirror has done to raise awareness of organ donation.” He tells sponsors: “This has been one of the most emotional and testing times of our lives.
“Amid the uncertainty, I’ve found strength and purpose in running. I’m working toward this half marathon, not just as a personal goal, but as a tribute to her strength and a way to support families like ours.” He is running to support the pioneering research of the British Heart Foundation. He added: “They do everything from heart transplants to portable defibrillators, and provide vital support for families across the UK.
“Every mile I run is for the children and families battling heart disease.” Millie Fullerton, 27, of Ellesmere Port., is running with Laura Booth, 28, of Sheffield, and Maria Camacho-Encina, 35, of Seville, part of the British Heart Foundation research team based at Newcastle’s Centre for Life.
Millie specialises in the causes of cardiomyopathy, which enlarges the heart. She said: ” We are investigating treatments for heart disease, which is the biggest killer in the world, there are so many people in the UK who are affected. “It is really important to fund these projects at the moment, including our project in Newcastle. There is £100m from the British Heart Foundation going into research in the UK, the work that they do is absolutely incredible.”
