Mother of a four-year-old Amirah Shehzad is keen to fundraise for research into a rare disease it has emerged.
Amirah Shehzad was diagnosed with Krabbe disease - a rare illness which results in progressive damage to the nervous system - before her first birthday. Last year, a Hight Court case about Amirah’s care heard that medics in Leicester believed life-saving treatment shouldn't be administered if Amirah presented following a cardiac arrest. But the case was adjourned when the family moved to Stoke and doctors there said they would treat her if she presented at hospital. Now, her mum Afroz wants to raise cash to fund research into the rare disease, with clinical trials in the US giving her hope.
In her statement to Leicester Mercury, she said, “Amirah has proved doctors wrong so many times already. We were told she would only live to be 15 months old, now I look at my four-year-old and wonder what else she can do. If I hadn’t have gone to the High Court, she might not be here now. I could have lost her, but I can’t think about that. I fought for her life once and I will do it again, she is my daughter, I have to.
“We haven’t got time to waste with her, she has been really well and is really well, she has spent a lot of time at home with us, she has caught and survived coronavirus. I want to know now what can be done to help her and others with Krabbe’s, there must be something. A vaccine for Covid was developed in a year, that just shows what can be achieved. If there is anything that can be done for her I want it to be.”
A bipap machine is helping Amirah and she is now progressing well with doctors thinking about operating so she can have a feeding tube.
“We don’t know when that can happen yet because of Covid, but we are looking forward to things improving for her. The fundraising will hopefully help us fund research and maybe even treatment if it becomes available.”
