Emerson's spinal cord injury

£9,860 of £100,000 goal

Raised by 116 people in 25 months
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 Emerson became very shy and withdrawn and wasn’t the little boy we once knew.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



.

www.facebook.com/emersongrant2014
www.emerson-grant.com
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Attending Shriners hospital in Philadelphia was really the best thing for our family to do for #Emersongrant2014.

Within days his confidence grew, it was like a light switch had been turned on and we started to see our little Emerson return. It was a very successful trip, however it also made us realise that this is really just the beginning of this long journey for Emerson’s medical health and physical rehabilitation.

Unfortunately, we have now been advised that the cyst on Emerson’s spine is likely to return and Emerson will require further lengthy surgery which could result in him losing his mobility that he already has or even worse could be life threatening.

No one can tell us when this will happen.

It’s like a cancer but with no medicine to make it stop or no cure right now.

As a family, we will do whatever we can to help Emerson and we need and want to be prepared and start to fundraise to pay for the medical treatment followed by his rehabilitation.

We are advised the best place for this would be in America where the professionals are companionate and experienced in spinal cord surgery for children and would provide experienced physical and occupational therapy that would strengthen Emerson rehabilitation after his surgery.

Emerson now require MRI scans every 3-4 months and we are scheduled to return to Philadelphia for consultations with neurological specialist this autumn.

We fully appreciate all the fundraising events that family and friends have organised over this past 11 months and we felt that coming up to Emerson’s 12 month of being paralysed we would like to take part in a family fundraising event.

We have met so many inspirational people over the months, who have been effected by Spinal Cord Injury and we felt that now is the time for us to take on a challenge and believe that #anythingispossible

So, for our sins we have entered the Superhero Half Tri and hope to kick start fundraising for #emersongrant2014

Emerson’s 13 year old sister Saffron will be taking on a 400m open water Swim

Emerson’s 16 year old brother Cameron and dad Lee will be taking on the 10K Bike ride

Emerson's mum will be pushing with Emerson in his wheelchair for the 2.5k run

A family event to raise funds for #emersongrant2014
If you are unable to donate, please Share this with your family and friends and if you are free on Sunday 19th August 2017 please come and support and cheer us on! We would love to see you all
#family
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Emerson Grant's Story - The road to recovery
Published by Anna Marina May 26th 2017

www.facebook.com/emersongrant2014 

#emersongrant2014 - #spinalcordinjury
C6/C7 - T1 is the level of injury which basically means he should be #paralysed from the chest down #tetraplegic

With this he has a weak cough and is more prone to chest infections that can quickly escalate to something very serious and be life threatening. His respiratory, his lungs are weaker than an average 2 year old. He has a very weak cough. We are not sure if his speech is damaged as his just 2 years old and in time this will appear to be an issue as he gets older. We are required to self manage his bowels once a day and his bladder every 3 hours.

With this spinal cord injury Emerson has a number of complicated conditions that could cause a severe stroke and even death, one being #autonomicdyresflexia.

Autonomic dysreflexia, also known as hyperreflexia, is a state that is unique to patients after spinal cord injury at a T-5 level and above. Autonomic dysreflexia means an over-activity of the Autonomic Nervous System. We are required to monitor on a daily basis visually his temperature, heart rate, BP, even clothing to look for signs of stress.

But being the #bravewarrior that he is through hard work and privately paid #physiotherapy, that we have been able to provide due to the fabulous fundraising events that friends, family and even strangers have carried out all around the world, Emerson was able to gain good upper body movement; have almost full control of his arms and hands and self propel in a manual wheelchair.

Those that have met Emerson in his wheelchair or have followed his journey through social media will know he will try and race you at high speeds both adults and children :)

Nothing phased him - he was up for trying anything that was put in his path.

Emerson's spinal cord injury was caused by an anachoid cyst that appeared on his spine.

Emerson is wearing the scars of x2 spinal cord surgeries carried out in just 9 months.

August 2016 the first cyst was diagnosed and was causing pressure on his spinal nerve that caused him to be paralysed- This was decompressed.

May 2017 the same cyst refilled with fluid causing more pressure on his spinal nerve and again was decompressed.

No matter what he has been through or what his journey brings every single day he wakes up with a cheeky smile and lights up the room that he enters.

Emerson has made a massive improvement in his recovery and yet his future is still unknown. At the moment there is no cure for Emerson's condition - just daily management and lifestyle changes!

This Wednesday, if all goes well Emerson will be transferred to Stoke Mandaville spinal cord rehabilitation unit for a week of physical assessments and physio therapy.

If there is any chance of Emerson regaining all the movement he had post op the first time around back in Feb 2017, he will need some intense regular specialist physio therapy sessions that is sadly not available on the NHS.

We are not wanting for Emerson to learn to walk again. Right now we want nothing more to see Emerson back in his wheelchair racing around giving everyone a high five and more importantly gaining his independence back and doing what most 2 years olds like to do - that's causing a little mischief and exploring their surroundings!

We are so grateful for all the fundraising events and all the donations received so far but sadly we really need our family and friends help even more now.

Emerson requires at least 4 hours a week physio therapy and hydro therapy which costs between £400-£500 per week and this is not available on the NHS.

If you would like to hold a fundraising event for Emerson please get in contact with Anna-Marina for some ideas and tips.

Emerson has a fundraising page set up www.gofundme.com/emersongrant2014 so you can use this account to donate or as your base for your fundraising event. Or you can set up a Just Giving account on behalf of EmersonGrant2014

Thank you all so much
xx❤️
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Emerson Grant's Story - The road to recovery
Published by Anna Marina on May 23rd 2017
 
www.facebook.com/emersongrant2014

24 hours after the second MRI to check if the surgery was successful and was not the cause of #emersongrant2014 autonomic dysfunction/nervous system.

I'm not sure if we are happy, sad or just anxious parents. We have been told that the surgery that was carried out to decompress the cyst was successful and for now/today with the stent in place we are hopeful that if any fluid reappears in the cyst sack the stent will hopefully prevent it from growing and will hopefully act as a drain.

There is no guarantee of this working, no guarantee of the stent being blocked and no guarantee how long this stent will last. In fact there is no proven research of this procedure ever carried out on a 2 year old child.

We are desperately trying to come to terms with the fact that if any of the latter happens Emerson would need complicated surgery on his spine over and over again to remove the cyst.

Emerson is just 2 years old and the cyst returned less than 6 months from his first surgery- So many questions with no answers except instruction for us to just get on with it and deal with it!

In addition to all this worry Emerson continues to have further tests and went down for an echo heart scan today as apparently his body is suffering with autonomic dysfunction which means his central nervous system is not working as it should.

The autonomic nervous system supplies and influences virtually every organ in the body. Additionally, it is involved in major integrative processes such as control of blood pressure and body temperature - Emerson's blood pressure and body temperature continues to spike on a regular basis.

We are aware of autonomic dyresflexia but this new word #dysfunction #nervoussystem concerns us deeply.

We are desperate for someone to sit us down and hold our hand and tell us this needs to be investigated and monitored and we have this all in hand. We will wait to hear thouse words with opened arms!

With this all in mind we have no other option but to be hopeful and help Emerson in making a slow positive recovery but with with the new added lifetime challenges ahead and not very much advise given to us as parents.

Tommorrow is another day and another battle.

Thank you all so much for your messages and positive vibes
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Emerson Grant's Story - The road to recovery at Nicholls Ward, Lanesborough Wing, St George's Hospital.

Published by Anna Marina · May 14 at 10:42pm

www.facebook.com/emersongrant2014

After #emersongrant2014 2nd #spinalcordinjury surgery he has now been successfully moved from paediatric Intensive Care Unit to the children's ward where he previously spent 4 months.
It's very early days yet but we have faith in the neuro surgeon and his team that spent over 5 hours pulling back Emerson's spine to decompress the #arachnoidcyst and then also placing a small #stent in his spine to gently drain away any reoccurring fluids.
The next 48 hours is crucial and we are hoping to get Emerson more stable and back to his usual smiling loveable self.
Emerson's Road to Recovery continues slowly but surely.
Thank you all so very much for keeping us strong and positive.
This is one of toughest challenges we have had to face so far with #lifeafterspinalcordinjury
We have shed buckets of tears, were extremely frightened and felt completely helpless that we couldn't help and make our little baba better...
We feel so blessed that we have all this support behind us from new and old friends.
That old saying #lifeisforliving is so true as you never know what is around the corner and how quickly your life can change with a drop of a pin.
#enjoylife #lifeafterspinalcordinjury #spinalcordinjuryhope #tetraplegia #nevergiveup #spinalcordinjuryresearch
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£9,860 of £100,000 goal

Raised by 116 people in 25 months
Created October 31, 2016
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DL
£20
Despina Loizou
4 months ago

God bless you little man xxx ( I work with your sister Paris)

EF
£50
Erdo Foga
5 months ago

Praying for this young Warrior ❤

£500
Anonymous
6 months ago
£10
Anonymous
8 months ago
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