Millie's Magnificent Mobility

Emilia's little life wasn't quite part of the plans when it happened for us. Born in August 2015, we were thrilled with her safe arrival but terrified at the prospect of having to keep her alive and raise a decent human being. We have embraced both of those challenges wholeheartedly and anyone with a toddler knows that raising a decent human being is the easy part because toddlers are suicidal!

Our heartache started when at around 4 months old I noticed she wasn't opening her right hand or engaging her arm in play. By 6 months old I was convinced something was very wrong with her. Everyone else thought there was something wrong with me but a mother's heart knows best. This was out first fight over finances. I insisted on spending the best part of £200 on a private physio assessment, one of the best in London, to confirm my fears that she needed help. The months that followed all blurred into one with countless appointments and tests. Physiotherapy, occupational therapy, paediatric neurologists, MRI scans, epilepsy tests, vision and hearing tests... the list really is almost endless. Hours and hours were spent on the internet researching and reading. I spoke with doctors on the phone, pleaded with private paediatricians to see us quicker so I could find some peace in the form of answers. 

When she was 9 months old it came. Emilia was assessed for what felt like hours and given a diagnosis. Hemiplegic Cerebral Palsy. Brain damage. Irreversible. Life long disability. Those were the words I remember from that appointment. She might not walk. She might not talk. There is n o telling apart from giving it time. The standard NHS procedure is to support on a basic level. Provide physiotherapy and hope for improvement. It is a slightly defeatist approach and I wasn't about to be defeated on her behalf because I had set it in my head that if there was ever anything I could do to afford my child the luxury of living an independent life in the future, I was going to do it. 

Fast forward to October 2018, 2 whole years since her MRI confirmed a narrowed artery had caused damage to the left putamen area of the basal ganglia. A tiny part deep in the brain. This caused the right sided hemiplegia. That same scan revealed that Millie had an arachnoid cyst growing at the back of her brain, near the base of the spine. We have been told this cyst is 'probably harmless' but continue to push for further investigations.  In those 2 years we have undertaken every bit of reading possible and available on the internet. I have quizzed friends within the medical profession and I have read books (in a real library too!). I have become familiar with medical jargon and I have taken responsibility for 90% of Millie's therapy because our NHS, as wonderful as it has been to us, is stretched. We have funded countless other appointments privately with the support of our close family. 

As Millie grows she has amazed us all. She talks beautifully (and without stopping for breath sometimes) and she has learnt to walk. It has become apparent that her biggest struggle is going to be her leg and foot, both much more affected by the hemiplegia than her hand and arm. I remain firm on my promise to her though, I will do what I can do ensure she is able to lead an independent life in the future. 

At the moment we have reached a stumbling block in this process. As she grows her condition changes and so does the therapies that could help. Currently we are aiming to achieve another block of Constraint Induced Movement Therapy (CIMT), begin our journey with Functional Electrical Stimulation (FES) and visit the London Orthotic Clinic (LOC) for a specialised gait assessment and a carbon fibre orthotic splint. None of this is currently widely (or at all) available on the NHS which means seeking it privately. 

This is where we are finally asking for help. We have placed pride to the side for the sake of securing a better future for the kid. We are eternally grateful for any help anyone can give, particularly words of support. I have been putting this off for a long time but our time has come to put our hands up and say 'we can't do this alone anymore.' 

Huge thanks to you all. 

Much Love

The Leonards