Mia and Me
Donation protected
As some of you will know I have been and will be spending lots of my free time this year training for something quite extreme, but before I tell you about that please take a moment to read a few words to understand why I am doing this; my beautiful niece Mia Clucas.
Following the birth of Mia, my brother in-law Andy and his wife Nikki experienced the same things all new parents do; lack of sleep, dirty nappies and the night feed, combined with feelings of complete and utter devotion and pride with the beautiful little person they had brought into the world. However after only a few days of being born, Mia started to have mini seizures. The nurses and health care visitor were not too alarmed by this development and of course, as some of you will know, small seizures in infants is not something which is uncommon. Mr Brother and his wife were however not convinced that all was well and like any concerned parent would do, they took Mia to hospital for a check-up.
In September 2016, only a few weeks old, Mia visited the hospital where she was born, and a paediatrician specialising in infant epilepsy was called to investigate Mia's seizures. At this stage the whole family were of course worried, but we all had similar thoughts and hopes; perhaps she was having normal baby seizures like the health visitor mentioned, or the very worst case she may have epilepsy.
Mia had a number of tests that day in September, including a full brain scan. On the same day she came in for tests, the results came back and Dr Brown came to see my brother and his wife to let them know the outcome. Now anyone who has a child in their life, especially a new born baby, will tell you that the worst thing that you can ever be told is that your child is sick. This is every parent’s worst nightmare.
In some cases there are chances that your child will recover and when there is treatment available hopefully a chance exists that your child will make a full recovery. Sadly for Mia her illness is not something which can be reversed or fixed with treatment.
During the course of 2017 leading geneticists diagnosed Mia with Coffin-Siris Syndrome. This is an extremely rare disorder affecting only a few hundred people worldwide. There are a number of gene mutations which cause Coffin-Siris. Mia’s affected gene is called SMARCB1 and the specific way hers has mutated is the only recorded case in the world. This makes Mia very special to us indeed!
Mia is a very happy child but as she approaches 18 months her development remains at that of a 2-3 month old. She can’t hold her head steady for prolonged periods, she can’t roll, sit, crawl or stand. She continues to have daily seizures and will soon begin a special diet (ketogenic) in an attempt to reduce them. She has only a little understanding of the world around her and her vision is extremely poor, only being able to differentiate between light and dark.
She continues to have regular physiotherapy sessions and also has weekly visits from sensory teachers and Portage workers. She attends the Sense hydrotherapy pool and sensory session every week also.
Mia now has a special standing frame and soon will require her first wheelchair stroller. It is clear she will require much more equipment and assistance as she grows.
My wife Victoria, her friends and family have already done a huge amount in supporting Andy, Nikki & Mia and now it’s time for me to step up to the plate.
The Unknown
I’m no stranger to taking on a challenge - I’ve done a few over the years, but this is different. This is for family, little Mia who needs all the help she can get – a cause worthy beyond words and therefore one for which it only felt right to push myself far beyond anything I’ve done before.
Rather than one single event, this year I am doing several, starting with the two laps I finished today 3rd March at ‘Winter Nuts’ a running event which included a lot of natural obstacles, including regular full submersion into what was be very cold (and frozen) lakes, river crossing rivers and the like…
During the following few months slowly but surely ramping up the mileage/extremity, and am registered for a number of races, leading up to an 8 hour endurance event running through the night from midnight until 8am.
All of these are just training and conditioning however, in preparation for what will be the ultimate test – Judgement Day: The Unknown.
The Unknown is a gruelling non-stop 36 hour endurance event described by the fittest person I know as 36 hours of hell and the hardest thing he’s ever done (great!). Simply put, it is an incredibly extreme test of your physical and mental grit, not dissimilar to the final aspect of special forces selection ‘The Punisher’.
Over the course of 36 hours the small number of participants are subjected to a continuous physical beasting, with regular mind games and disorientation. I’ve seen dark blurry photos of people doing press-ups in the cold sea in the middle of the night, kneeling in stress positions with bags on their heads and crumpled in heaps vomiting through exhaustion when trying to run up sand dunes as the sun comes up on the final morning.
You don’t know what you will be faced with during the 36 hours until it happens, and everything that happens is designed to push you to and beyond your absolute limits.
One thing is for sure, it is going to be very tough and very painful, but this is for family and I’ve never been more determined to see something through.
After developing a love for cycling last year, I’ve spent the last couple of months in physio and slowly but steadily ‘learning’ how to run again. This might sound weird, but I hate running, am terribly bad at it and prone to injuries so have been subject to a case of very gradually building up the mileage.
It’s going to be a tough old slog but I am already in a reasonably good place with my training, so will try to take these events in my stride over the next few months so that when I turn up for The Unknown I will be ready for whatever it throws my way.
Please help me make a difference...
The reason I am taking on this mountain of a challenge, is to raise funds to support little Mia and try to make a positive difference to her life.
Mia is unable to stand without assistance and therefore has a special standing frame but she will soon will require her first wheelchair stroller. She requires assistance will all aspects of her daily life and the money I intend to raise will help fund some of the equipment and assistance that she will need as she grows into a young girl and beyond. Even small pieces of sensory equipment could really be helping her development and awareness of the world around her.
Everyone I have already spoken to about this so far has been so incredibly motivating, so thank you you so much for your support, and I will be sure to keep you updated.
If you would like to make a donation to help this incredible little girl then you can do so via this page, and thank you so much from all of us for helping make a difference.
Following the birth of Mia, my brother in-law Andy and his wife Nikki experienced the same things all new parents do; lack of sleep, dirty nappies and the night feed, combined with feelings of complete and utter devotion and pride with the beautiful little person they had brought into the world. However after only a few days of being born, Mia started to have mini seizures. The nurses and health care visitor were not too alarmed by this development and of course, as some of you will know, small seizures in infants is not something which is uncommon. Mr Brother and his wife were however not convinced that all was well and like any concerned parent would do, they took Mia to hospital for a check-up.
In September 2016, only a few weeks old, Mia visited the hospital where she was born, and a paediatrician specialising in infant epilepsy was called to investigate Mia's seizures. At this stage the whole family were of course worried, but we all had similar thoughts and hopes; perhaps she was having normal baby seizures like the health visitor mentioned, or the very worst case she may have epilepsy.
Mia had a number of tests that day in September, including a full brain scan. On the same day she came in for tests, the results came back and Dr Brown came to see my brother and his wife to let them know the outcome. Now anyone who has a child in their life, especially a new born baby, will tell you that the worst thing that you can ever be told is that your child is sick. This is every parent’s worst nightmare.
In some cases there are chances that your child will recover and when there is treatment available hopefully a chance exists that your child will make a full recovery. Sadly for Mia her illness is not something which can be reversed or fixed with treatment.
During the course of 2017 leading geneticists diagnosed Mia with Coffin-Siris Syndrome. This is an extremely rare disorder affecting only a few hundred people worldwide. There are a number of gene mutations which cause Coffin-Siris. Mia’s affected gene is called SMARCB1 and the specific way hers has mutated is the only recorded case in the world. This makes Mia very special to us indeed!
Mia is a very happy child but as she approaches 18 months her development remains at that of a 2-3 month old. She can’t hold her head steady for prolonged periods, she can’t roll, sit, crawl or stand. She continues to have daily seizures and will soon begin a special diet (ketogenic) in an attempt to reduce them. She has only a little understanding of the world around her and her vision is extremely poor, only being able to differentiate between light and dark.
She continues to have regular physiotherapy sessions and also has weekly visits from sensory teachers and Portage workers. She attends the Sense hydrotherapy pool and sensory session every week also.
Mia now has a special standing frame and soon will require her first wheelchair stroller. It is clear she will require much more equipment and assistance as she grows.
My wife Victoria, her friends and family have already done a huge amount in supporting Andy, Nikki & Mia and now it’s time for me to step up to the plate.
The Unknown
I’m no stranger to taking on a challenge - I’ve done a few over the years, but this is different. This is for family, little Mia who needs all the help she can get – a cause worthy beyond words and therefore one for which it only felt right to push myself far beyond anything I’ve done before.
Rather than one single event, this year I am doing several, starting with the two laps I finished today 3rd March at ‘Winter Nuts’ a running event which included a lot of natural obstacles, including regular full submersion into what was be very cold (and frozen) lakes, river crossing rivers and the like…
During the following few months slowly but surely ramping up the mileage/extremity, and am registered for a number of races, leading up to an 8 hour endurance event running through the night from midnight until 8am.
All of these are just training and conditioning however, in preparation for what will be the ultimate test – Judgement Day: The Unknown.
The Unknown is a gruelling non-stop 36 hour endurance event described by the fittest person I know as 36 hours of hell and the hardest thing he’s ever done (great!). Simply put, it is an incredibly extreme test of your physical and mental grit, not dissimilar to the final aspect of special forces selection ‘The Punisher’.
Over the course of 36 hours the small number of participants are subjected to a continuous physical beasting, with regular mind games and disorientation. I’ve seen dark blurry photos of people doing press-ups in the cold sea in the middle of the night, kneeling in stress positions with bags on their heads and crumpled in heaps vomiting through exhaustion when trying to run up sand dunes as the sun comes up on the final morning.
You don’t know what you will be faced with during the 36 hours until it happens, and everything that happens is designed to push you to and beyond your absolute limits.
One thing is for sure, it is going to be very tough and very painful, but this is for family and I’ve never been more determined to see something through.
After developing a love for cycling last year, I’ve spent the last couple of months in physio and slowly but steadily ‘learning’ how to run again. This might sound weird, but I hate running, am terribly bad at it and prone to injuries so have been subject to a case of very gradually building up the mileage.
It’s going to be a tough old slog but I am already in a reasonably good place with my training, so will try to take these events in my stride over the next few months so that when I turn up for The Unknown I will be ready for whatever it throws my way.
Please help me make a difference...
The reason I am taking on this mountain of a challenge, is to raise funds to support little Mia and try to make a positive difference to her life.
Mia is unable to stand without assistance and therefore has a special standing frame but she will soon will require her first wheelchair stroller. She requires assistance will all aspects of her daily life and the money I intend to raise will help fund some of the equipment and assistance that she will need as she grows into a young girl and beyond. Even small pieces of sensory equipment could really be helping her development and awareness of the world around her.
Everyone I have already spoken to about this so far has been so incredibly motivating, so thank you you so much for your support, and I will be sure to keep you updated.
If you would like to make a donation to help this incredible little girl then you can do so via this page, and thank you so much from all of us for helping make a difference.
Organizer and beneficiary
Paul Darby
Organizer
Andrew Clucas
Beneficiary
