Sheffield sisters fight to save the life of their baby cousin who was born with a rare fatal disease
Three Sheffield sisters on a mission to raise enough money to help save the life of their baby cousin who was born with a rare, genetic disease.
Mia, Isla and Ida Mtukaiza are aiming to raise £20,000 to help contribute to Alex Jutrzenka’s treatment for type one spinal muscular atrophy.
Alex was born in June and was diagnosed with the fatal, genetic disease. According to the NHS, most babies with the condition die during the first years of their lives, usually as a result of breathing difficulties.
Doctors have said that the best chance to save Alex is to raise enough money to perform gene therapy treatment in the US, but it is extremely expensive.
The treatment was only approved for use earlier this year and is only available for children under two-years-old. The quicker it is received by the patient; the better results are, so it is important that the money is raised as quickly as possible.
Writing on their online JustGiving donation page, the trio wrote: “Alex is only four-months-old but already is the bravest little fighter we know.
“Alex is currently receiving Spinraza, the first treatment that may lead to significant improvement in children with this condition.
“Unfortunately, it does not cure it and doesn’t always work the way it is expected to. We don't know if it will work for Alex, but what we know is that gene therapy gives Alex the best chance to live an independent life – something most of us take for granted but our little cousin has to fight for it every single day.”
Ida, aged eight, added: “We want to do everything we can to help little Alex. It’s so unfair that he’s sick. We want to raise this money so he can get the medicine he needs to be get better.”
The sisters’ mother, and Alex’s aunt, Ewa Jutrzenka said she was proud that her daughters want to help save their cousin.
She added: “Can you imagine what it must be like to experience the joy of having a child and then finding out that he could die because the treatment he needs is too expensive? Money should not be a barrier preventing an innocent child from living his life.”