The Christmas, young Imogen Roberts was 3, she was carried into her home by her father, allowed just a couple of days out of hospital. Paralysed by the rare disease Transverse Myelitis, an inflammation of the spinal cord, Imogen was very poorly. Just one year on, Imogen was back on her feet with support and making great progress.
She couldn’t wait for her mum Holly to put up the tree and decorations and then wake on Christmas Day in her own bed, ready to enjoy the festivities.
At nearly three years old Imogen, from Raunds in Northamptonshire, was just like any other little girl her age, smiley and happy. However, late October 2018, during a family holiday to Belgium, she became seriously ill and was rushed to the local hospital where the doctors believed she had suffered from an Asthma attack. She spent the next three days in hospital before being allowed to travel back to the UK.
Just two days later Imogen fell out of bed and was immobile. She had lost the feeling and use of her legs and her body felt painful. Her parents, Holly and Andrew, took her straight to the doctors who suspected a virus and advised the symptoms could last up to two weeks. Imogen didn’t improve and was eventually admitted to Kettering General Hospital. The doctors were bemused by her symptoms but after liaising with specialists at The John Radcliffe hospital in Oxford recommended Imogen had an MRI Scan to explain her symptoms. The scan revealed a build-up of fluid around her spinal cord and for the next five days Imogen was on an extremely high dose of steroids with the aim of reducing the fluid around her spine to restore the feeling in her legs.
Unfortunately, the steroids didn’t work and Imogen was then transferred to The John Radcliffe Hospital where further investigations revealed she had Transverse Myelitis, an inflammation of both sides of one section of the spinal cord. This neurological condition often damages the insulating material covering nerve cell fibres and interrupts the messages from the spinal cord to the limbs.
Won’t walk again
After several meetings with specialists, her parents received the heart-breaking news that there was a very high chance that Imogen would never walk again.
“As parent to hear that news is absolutely heart-breaking, it was difficult to explain things to Imogen but she remained a happy, smiley, positive little girl. Don’t get me wrong she has her down days but throughout her time in hospital she was so brave and amazing. Eventually she was let of hospital to come home full time in January this year. It was such an overwhelming feeling of relief to have her home, but we weren’t sure what to do next. We were told about a specialist spinal cord injury rehab facility called Neurokinex which has a dedicated children’s unit.”
Holly found out that Neurokinex offers six free sessions on the NHS so, with nothing to lose, they visited in February 2019 to have Imogen assessed.
Weight lifted from us
“As soon as we arrived we all immediately felt at ease,” says Holly. “Their dedicated children’s unit at Gatwick is just perfect for Imogen. It looks like a bright play space and not intimidating in the least. All the staff are just so friendly and welcoming,” she continues. “For the first session, they just observed Imogen and let her play. There was no pressure at all, which felt like a weight had been lifted off our shoulders.
“When we first arrived at Neurokinex, Imogen was just starting to crawl,” says Holly. “Now, thanks to their support, Imogen can stand up, sometimes she just does it without even realising which is amazing. She has a huge sense of self-belief, which is lovely to see. The trainers make her sessions as fun as possible. It has been really tough on our 10 -year-old son, Aidan but the Neurokinex staff are so lovely and involve him during her sessions so he feels part of the process in helping Imogen.”
Back on her feet
Imogen attends bi-weekly sessions at Neurokinex Kids in Gatwick and weekly sessions at Neurokinex Hemel Hempstead as it’s slightly closer to home. The team also gives her exercises to do with mum and dad at home and she’s now able to walk with the support of a frame. Soon Imogen will have new splints to help her walk independently too.
Imogen will turn four just before Christmas on December 17th and this birthday will be much happier and positive than last year.
A happier birthday
“Imogen absolutely loves Disney so this year we are taking her and her friends to see Frozen 2 at the cinema,” says Holly. “We want to make it extra special for her as last year she was in hospital on her birthday.
“Christmas will also be a big affair in our house this year. We’ve already got our tree and I can’t wait to make it a big celebration for the kids this year as they’ve both been through so much.
“Whilst we can’t say what the future holds for Imogen, I’m sure with her determination and the support we are receiving from Neurokinex that she has every chance she’ll be able to walk independently one day.”
Holly and Imogen’s Uncle Steven are fundraising to continue Imogen’s rehabilitation at Neurokinex at https://www.justgiving.com/crowdfunding/imogensnextstep