Based in Rochdale
‘Hello. I’m Aiman and this is my mum Sabrina, dad Usman and my brother Rayyan. I love spending time with my family and friends, superheroes, watching movies and collecting action figures - especially WWE wrestling figures!’
Aiman’s mum, Sabrina
tells the family’s journey with mito:
Aiman’s early years were fine health-wise except for minor developmental delays and some food issues. Just before his fifth birthday he wasn’t quite his normal self and then I heard him making strange sound in the early hours. We rushed to hospital where he was found to be having seizures and transferred to Royal Manchester Children’s hospital where he could receive treatment in the ICU ward. Within 24 hours our world was turned upside down.
It was shocking to see him hooked up to so many monitors. He seemed so small in the bed. I just wanted to hold him. Aiman was unconscious for the next 3 days which were hell for us. The doctors suspected he might have an underlying Mitochondrial Disorder preventing his body coping with a virus and they were flushing his body with antibiotics. All we could do was pray and wait. I began researching mito. as I had never heard of it before. On the 4th day, Aiman woke up! We were so relieved.
Over the next year Aiman had many tests
but none of the results were conclusive.
We were very lucky to have amazing doctors and other health
professionals around us though to support his medical needs.
In February 2014 we were offered to be part of a Mito Exome
Sequencing Study by Newcastle University. Two years on we
received confirmation that a mutation in ATP5D was responsible for
Aiman’s problems’. A genetic fault passed from Usman and I meant
his body couldn’t produce enough energy for cells. It was actually a
relief to get an official diagnosis so we could understand the
reasons behind the way he is and how to manage his care better.
As there’s no cure for mito,
it’s all about managing Aiman’s care.
Having mito means that Aiman’s body can’t produce enough energy to function properly compared to the average child of his age. He tires very easily and if he gets too lethargic becomes very poorly and starts vomiting. We give him a high content glucose powder which helps him to avoid becoming too sick. Aiman needs plenty of rest breaks when doing any sort of physical activity. He can’t walk much so has to use a wheelchair on any trips out. His immune system is also weak so we have to take extra precautions to help prevent him from catching viruses.
Aiman is now seen annually by the Neuromuscular Unit
and Cardiology as well as the genetics unit at Royal Manchester
We have a regimen to follow if feels unwell and we do our best to support his daily activities whilst encouraging his independence. He does struggle at times and becomes frustrated with the limitations of what his body will allow him to do, but we try to keep him upbeat as much as possible. A bad phase in October 2018 resulted in support from a wonderful psychologist, paediatrician and some counselling through Thrive. Aiman attends Redwood Secondary School (a special needs school), which has been brilliant for him. He’s made new friends and adores his teachers who are very supportive.
Aiman is a very friendly, happy, kind
and caring boy who is loved by all.
Yes, this is a progressive disease, but no one knows what the future holds. We have mentally prepared ourselves that Aiman will most likely deteriorate further in regard to muscle strength, stamina and skills and I do lose sleep over it, but we remain positive so we can pass positive vibes on to Aiman.
Thanks for reading our story.
Aiman and family June 2020
Our mission is
to help others.
If we can help just one person
that would be wonderful.
By telling our story and spreading as much awareness as we can, we hope that we will be able to help other families feel less alone in coping with the illness.
Just a little support for our mission
would mean such a lot.
Raising awareness raises
hopes of a cure for Aiman.
We would love to raise lots of awareness and
especially within the Asian community. If we can
raise some funds along the way too for research
than that will be fantastic. Not only for Aiman but
for everyone affected by mitochondrial disease.
Aiman's Mito Mission
Get involved and
support Aiman’s cause.
Any funds raised by Aiman’s mission goes to My Mito Mission’s central funds to be granted towards research and support projects to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to hosting a bake sale, homing a collecting can to giving out Aiman’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Aiman’s mission, choose a way that suits you below.
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