Rochdale family raising awareness of Mitochondrial Disease

To mark Mitochondrial Disease Awareness Week (13 – 19 September 2020) a Rochdale family have teamed up with registered charity My Mito Mission to raise awareness of the genetic condition.

12-year-old Aiman Usman from Sudden was diagnosed with Mitochondrial Disease (MD) after he suddenly fell ill in 2012.

A progressive incurable condition, MD causes mutations in mitochondria which are vital to every cell in the body. In Aiman’s case, this means his body cannot produce enough energy, leaving him very lethargic most days and unable to function properly compared to the average child of his age.

Even with a prescribed high content glucose drink which helps him avoid becoming too sick, Aiman is unable to walk much so has to use a wheelchair on trips out and also has a weak immune system – the family have been self-isolating since the start of March this year, before the official lockdown was announced by the government.

 

 

In September 2012, a then 4-year-old Aiman was rushed to Royal Manchester Children’s Hospital where he could receive treatment in the Intensive Care Unit after he was found to be having seizures. For the next three days, Aiman was hooked up to monitors and unconscious.

Aiman’s mother Sabrina, who has lived in Rochdale all her life, spoke of his journey to diagnosis: “It was shocking to see him hooked up to so many monitors. He seemed so small in the bed.

“The doctors suspected he might have an underlying Mitochondrial Disorder preventing his body coping with a virus, so they were flushing his body with antibiotics. All we could do was pray and wait and on the fourth day, he woke up.

“Diagnosing mitochondrial disease is very difficult but doctors always suspected Aiman had a metabolic condition like this, and I always had a sixth sense, as his mother, telling me that something was not right.

“In 2014 we were offered to be part of a Mito Exome Sequencing Study by Newcastle University where they carry out genes and DNA testing. Two years later we finally received an official diagnosis - a genetic fault passed from his father and I meant his body could not produce enough energy for cells. It was actually a relief to get a diagnosis so we could understand the reasons behind the way he is and how to manage his care better.

“There is no cure for mitochondrial disease, so we want to raise as much funds as we possibly can for research into the condition.

“By sharing our story, not only can we help other families feel less alone in coping with the illness, but we can raise awareness and with awareness comes understanding, so people can understand what the condition is and realise the importance of funding research.”

Aiman is now seen annually by the Neuromuscular Unit and Cardiology, as well as the genetics unit at Royal Manchester Children’s hospital. Thankfully, he has not had an unexpected hospital admission for the past three years.

 

 

Sabrina came across the charity My Mito Mission on social media and said they have been ‘really brilliant and supportive’ during a tough time for the family.

Aiman’s Mito Mission has now been set up through the charity to talk about Mitochondrial Disease facts, how Aiman deals with the condition and the general life of someone with the disease.

Sabrina added: “I knew nothing about the disease before Aiman’s diagnosis, so My Mito Mission has really helped us branch out and get into contact with other parents going through the same thing. It is really nice to talk to mothers who are in a similar situation and understand.

“For MD awareness week we will be wearing green and I’m asking the public to send us pictures of them in green too. We are also selling My Mito Mission merchandise such as t-shirts, hoodies and lapel pins.”

To read more about Aiman’s Mito Mission or to donate visit:

• www.justgiving.com/campaign/aimansmitomission

To join Aiman’s Mito Mission group:

• www.facebook.com/groups/aimansmitomission/