Emerson's spinal cord injury

Prior to his life threatening illness my younger brother Emerson was an above average 20 month old toddler. I used to enjoy taking him to kiddikicks football on a Saturday morning with my parents and watching him run around with all the other toddlers and friends that he had made.

Emerson loved nothing more than to run into my bedroom every morning, wake me up and persuade me to take him into the garden to play hide and seek, peek a boo or just blow millions of bubbles so he could run and try and catch them.

Emerson had just settled into his nursery where he enjoyed playing, climbing, running and jumping about with his new toddler friends.

Life was so much fun watching my little brother enjoying himself.

15th August 2016 - Emerson became ill over a good few weeks and then was unable to weight bare and was finally admitted into hospital for an MRI scan.

The doctors told us the devastating news that he had an arachnoid cyst on his spine - Level C6/C7-T1.

The surgeon removed this, however the surgery caused scaring on his spinal nerve and when he woke up after 5 hours surgery, he was unable to move his body from the chest down and was unable to use his bladder and empty his bowels.

Life changed dramatically for Emerson and my family, Emerson is now classed disabled and requires many years of rehabilitation. It is unknown if Emerson will ever walk again but my parents are positive and strong and say that if you believe and have hope and faith, there is a good chance of him regaining his mobility, but this requires time, specialist therapy and specialist equipment and lots of love and cuddles.

If there is any chance of Emerson regaining his mobility again, he will need physio therapy and specialised equipment. Sadly, we have quickly learnt that as soon as people with spinal cord injuries are discharged from the hospital they are essentially on their own when it comes to physical therapy/rehabilitation in the UK.

After spending over 12 weeks in hospital, Emerson suffered from a number of UTI’s due to an indwelling catheter that was left too long, a Collapsed lung and pressure sores behind his head and on his lower back bone. Emerson became very shy and withdrawn and wasn’t the little boy we once knew.

Emerson was discharged on November 2016 and my family encouraged Emerson to embrace his new life in a wheelchair.

During this time Emerson gained good movement in his upper body with good upper body strength and was able to move his hands and arms.

He was able to self-propel in a manual wheel chair that was donated by the children’s charity and he was able to get around the room by commando crawling on the floor and also was strong enough to get into a sitting position.

Emerson continued to have bowel and bladder management and suffered regular with a life threatening condition Autonomic Dyresflexia.

However, our family researched the www and managed this well.

Due to the level of injury C6/C7-T1, Emerson also had weak respiratory muscles, he had a very weak cough.

December 2016 - Emerson was admitted to St Peters Hospital due to a chest infection - Bronchiolitis. He was admitted into the High Dependency unit for a stay of 18 days.

Feb 27th 2017
Emerson began to show neurological issues again and my parents become worried

2nd May 2017
Emerson went to bed as normal at 19.30. However he woke up suddenly at 04.30am. Emerson’s body started to lose body heat very quickly and he had a seizure.
Emerson was taken to hospital and was in resuscitation for over 6 hours. They were desperately trying to warm Emerson’s body up. He was in a seizure state for over 60 minutes.

10th May 2017 - Another MRI was carried out and this confirmed our fear that his cyst had refilled with fluid and was causing upper body issues.

12th May 2017- Emerson had over 5 hour’s open surgery to decompress the cyst again and a small stent was placed in his spine to try and prevent and drain away any re-occurring fluid.

Further tests were being carried out and are still under investigation to do with Emerson’s respiratory and metabolic bloods as Emerson was displaying lots of different symptoms.

June 2016 –Emerson went to Shriners Children hospital in Philadelphia, where he was an inpatient for 7 days and outpatient for 2 weeks. He was monitored for a body brace and RGO's.

10th August 2017
My Parents became concerned again and booked in for another MRI earlier than scheduled as they felt Emerson was beginning to show familiar neurological symptoms.

21st August 2017
After back to back MRI scans, CT scans, Ultra sounds of the spine and full body X-rays it has been confirmed what we most feared.

The dreaded arachnoid cyst is back, same place, more aggressive, much bigger.

I wish it was a simple task of decompressing it again for the third time round, but it's not - it's too high risk to have surgery, it's too high risk to not have surgery.

This is a no win situation.

As I'm typing this update up, I feel a little positive knowing Emerson's medical records have been shipped to America and are currently being looked at by 2 specialist hospitals who specialise in #spinalcordinjury.

We have had an opinion from a neuro surgeon consultant from Great Ormond Street hospital to come and look at Emerson and give his opinion on what to do next.

We sit here watching and monitoring the small but important signs of Emerson's body slowly not working.

We feel like we are living in a never ending nightmare and the words we speak, we feel we have said them time and time before back in August 2016 and again in May 2017, but they seem to not be heard!

We watch Emerson excited when an aeroplane or helicopter fly’s past his hospital bed, we encourage this excitement he displays. Its little precious moments like these that we will always remember and always smile about. We pray that he continues to be able to explore the simple things in life and what he sees in the world around him as a 2 year old should!

Every night, my parents put Emerson to bed, they sit watching over him, preying he is still breathing and praying that he will wake up the same person who they put to bed the night before.

Our hearts are cracking but not yet broken, we will continue to fight for our little solider and get him the best surgery with as little risk as possible. So he can continue to be the perfect little champ that he is, with his cheeky character and infectious smile.

14th September 2016
Sadly, it is not only the cyst we have to worry about;

After our positive meeting with a spinal surgeon from Great Ormond Street hospital. When I say positive I mean my parents were able to ask questions and understand the answers and feel a sense of trust that the person in front of them had great expertise in the spinal cord complications. He showed compassion, he was professional and most of all he gave them a plan on what to do. My parents even managed to sleep for a good 3 hours last night...

We didn't quite hear the news we had hoped for but it confirmed our fears in a more positive, moving forward way.

#spinalcordinjuries are complicated at the best of times, then throw in an arachnoid cyst that just won't and can't go away. Each time it comes back it causes more mobility loss and will eventually cause issues to the brain, as the CSF fluids that flow between your spine and brain to enable you to be mobile become damaged.
Each time there is a need for surgery the risks become higher. Each time Emerson has had surgery his spine has taken a hit and caused Scoliosis, kyphosis, low bone density and osteoporosis.

How can all this be possible we knew there were risks but we certainly didn't think Emerson would get all this is just 12 months!

We wish it could be removed and treatment could be given. Unfortunately this is not an option for Emerson. It's more complicated it's a very rare critical disease and there is no treatment to treat it to make it go away.
.
Emerson had a somatosensory evoked potentials test to check his nerves between legs, arms, spine and brain - this will be the baseline for any changes that occur from today. He also had a Magnetic stimulation test to measure signals from brain to spine.

There is nothing more to do now but wait and be ready for when the cyst that is in Emerson's spine compresses against his nerve and causes critical neurological damage.

All we can do is be positive, and keep on going, continue to go on adventures and enjoy the simple things in life that we are blessed to experience; Hold on to the fact that Emerson is eating, drinking, speaking, being cheeky, laughing and most of all breathing.

When the time comes and it's critical - we need surgery we know that it will need to be more aggressive, more attentive, more precise, we know this is more than likely going to cause more damage to his mobility, his brain function - we are positive we have somewhere and someone who is able to carry out the procedure professionally in the UK and we haven't ruled out our options for surgery in America. We are just waiting on the quotes which more than likely we couldn't afford anyway but we will hold onto every single price of hope possible.

His deterioration could happen in a few days, a few months but it will happen because the cyst is there growing - until that time we need to make a plan and first decide is this the best and only option and then after surgery where will Emerson have his rehabilitation, where is the place that will work his body to get it moving again. Sadly we fear it's not here in the UK.

So, again we are making a plan and getting quotes and a breakdown of costs to see how much Emerson's life is worth, how much we can raise to perhaps give him a future he truly deserves.

This is no doubt the biggest part of our journey so far and we continue to feel blessed with all the love and support from everyone and can't thank you all enough for your fundraising and donations.

If you would like to hold a fundraising event, however little or big please let us know via email: www.facebook.com/emersongrant2014

Thank you everyone so much for taking the time to read our story, to donate and to fundraise for Emerson.

Please follow Emerson story we hope by sharing our experience that we are also able to spread awareness on children with spinal injuries

Emerson is my super hero and is an inspiration to me and I hope he will be to other people in a similar position
Saffron xx



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www.facebook.com/emersongrant2014
www.emerson-grant.com

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Anna-Marina Dearsley 
Organizer
Weybridge, ENG
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