Emerson Charles Evan Grant (Named after an F1 racing driver Emerson Fittipaldi) and both his granddads Charlie Grant and late Evan Oxley) was born on 15th December 2014, we were overjoyed with this little surprise, due to us already being parents to a then 15 year old boy and a 12 year old girl.
We were both busy celebrating and writing a bucket list for our 40th birthdays. So finding out we were expecting another bundle of joy was the icing on the cake to complete our lovely family.
We were a little anxious and rusty at first, bringing a new-born into the world, but we knew it was meant to be and that it was very special and we were all very excited.
The perfect pregnancy with no complications…
Even before Emerson was born, he became a social media celebrity with the pregnancy milestones, baby shower and birth being captured by his photographer mum. Taking every opportunity possible capturing photographic memories – We wanted to shout from the roof tops that Emerson was to be born, it truly was a magical experience.
At just 12 days old, Emerson was selected to model for Olympus cameras at a photographic exhibition. The perfect model posing in a basket for a well known new-born photographer.
Life was so much fun for Emerson and our family, he really did complete our family and brought joy to everyone who met him.
It wasn’t a surprise when Emerson began to walk at just 11 months old, he was fast, he even had great ball skills kicking a ball and controlling where it was going.
At 12 months old, Emerson attended Rainbow nursery 4 days a week, we choose this nursery because it had such amazing grounds that allowed Emerson to explore and enjoy being outside as much as possible.
Emerson really embraced life and followed in his older siblings footsteps in being active and sporty and joined a toddler football club. Although a little younger that the rest of the football team he had just started KiddiKicks toddler football club where he received his first medal. Emerson was an above average child reaching his milestones before he should.
He enjoyed traveling up to his dad’s home town of Liverpool frequently at weekends to visit his nan and granddad (his granddad aged 75 recently climbed Snowdon to raise money for Emerson)
Emerson was such an energetic toddler running around, chasing bubbles, a football, a tennis racket or a rugby ball were never too far from his hands, having an older brother and sister who were extremely talented in sports, there was no doubt that Emerson would follow their footsteps and continue to become a great athlete competing at county and district level and enjoying his school sports days.
The day our life was changed…
On 15th August 2016, 19 month old Emerson Grant was mis-diagnosed with an arachnoid cyst on his spine, which resulted in him having surgery on his spine. He woke up paralysed from the chest down with a spinal cord injury – Tetraplegia incomplete.
Emerson was rushed to St George’s hospital in Tooting, where he underwent an emergency MRI scan which showed the arachnoid cyst had grown so big that it was effecting his nerves in his spine (C6/C7 – T2) and his bladder. The neurologist surgeon was good and she removed this, however not before Emerson lost the use of his lower body. If the cyst had been left any longer and untreated, Emerson would not be here today.
Emerson still has no feeling in the lower part of his body. He is now classed as disabled-incomplete and will require many years of rehabilitation, it is unknown if our son Emerson will be able to walk again but the doctors are positive and say that there is a good chance of Emerson regaining his mobility, through physio therapy and the use of specialist equipment.
He is already able to move his arms and now we will concentrate on working on his legs /lower trunk and bowel management, but this requires time, equipment, physio therapy and hydro therapy. Emerson will never gain 100% mobility back but we are not giving up and hope that he will take his first steps again and be able to walk up the stairs and run around kicking a ball and chasing bubbles with his sister and brother in the garden just like he used to.On Monday 3rd October 2016, Emerson was transferred to The National Spinal Injuries Centre (NSIC) based at Stoke Mandeville Hospital, Aylesbury where he will undertake 6 weeks rehabilitation.Unfortunately there are only x2 Spinal Injury Centre’s in the UK that have facilities for adolescent and paediatric children aged between 1 years and 18 years. Between the two hospitals they have just 12 beds available that are mostly fully booked with a very long waiting list. (Stanmore has just 3 beds and NSIC has just 9 beds)We have no idea what life will be like with a disabled child with spinal injuries and what expenses it will cost in future rehabilitation and equipment costs.We are hoping through the internet and social media sites we can reach out to other parents who have a child that has been effected with a similar spinal cord injury.
Unfortunately in May 2017 the cyst returned and Emerson had further surgery with a stent fitted into his spine to act as drainage if it reformed.
Sadly, on August 14th 2017, just 12 weeks later, Emerson’s parents received the worst news possible, the cyst had returned and it was as big as it was after the surgery in May 2017 and further more Emerson also had other additional life limiting complications such as confirmed Kyphosis that is getting worse each day the cyst remains in his spine, Scoliosis, bending of the Spine, almost all children with a Spinal injury under the age of 10 suffer from this. Osteopenia and low bone density which is weak bones that are so fragile they can break easily from something as simple as a sneeze.
This time around unfortunately it is too high risk to operate on the cyst, there is a very high risk of Emerson losing everything that he has gained back, such as upper body mobility, being able to eat and drink on his own and it could even cause further damage to the central nervous system including the brain.
Emerson’s parents have been left devastated by this tragic news and have been told by medical professionals in the UK to just wait until their 2 year old son deteriorates or shows neurological damage, unfortunately after this third operation there is no guarantee it will work and the cyst could return again.
The parents have sought medical help from America where the surgeons are more advanced in operating techniques and providing solutions with as little risk to Emerson as possible, but the bills are coming in at over £200,000 just for surgery and a further £100,000 for rehabilitation, which sadly the UK are limited in provision for children with spinal cord injuries.
Emerson’s mum said “we are so grateful to all the community and people that have helped us fund raise for Emerson so far, we have received donations from old and new friends and even strangers that our touched by Emerson’s Great smile and determination to never give up and keep on fighting.
“Our nights are the toughest and longest, we watch over Emerson before we put him to bed and all through the night, hoping that he won’t deteriorate whilst he is sleeping and we prey so hard that he will wake up the same child. We constantly check him over for respiratory, breathing, body temperature, bowel and bladder management and have to constantly move him every few hours all through the night to stop him getting pressure sores, we know to well, his deterioration can happen at any time.”
We hope that by documenting Emerson’s story we can reach out to people in similar circumstances and educate and build awareness of spinal cord injuries mostly in children under the age of 5 years old.