So I’m Ellie, Sienna’s Mum. Anyone who knows me will know that, unfortunately, I’ve always been an incredibly proud, independent and private person - therefore will know just how desperate the situation must be, for me to be doing this - but I will do anything I can to provide for my children. Many people will have seen through my Facebook that Sienna has been unwell since birth, but not many people know in depth, why.

Sienna was born in Bristol with a rare heart condition, called Pulmonary Atresia. She was put on IV medications at birth to essentially keep her body from realising she had been born - as if it had of before they had chance to operate - her heart wouldn’t have been able to get oxygen to her lungs. By chance, a wonderful lady detected this during a growth scan I had at 28 weeks - if this condition wasn’t detected before her birth, she would have suffocated and passed away very quickly after birth. Thankfully, Sienna received heart surgery at 4 days old, which was a success.

Sadly, this was short lived, as Sienna fell very ill very quickly, came down with Sepsis, and for anyone with medical understanding - reached a point where she was in a medically induced coma, her saturation levels depleted to 17, and we were told to prepare for the worst.

Someone above must have been watching over us as eventually she found the strength to recover, she came around from her coma, and eventually some time down the line with medications, an NG tube and some crazily good luck, we were discharged.

All was well and good for a few months, Sienna was making progress and we were counting our lucky stars. Until one day, Sienna’s grandparents were babysitting, and noticed Sienna having a seizure. They rushed Sienna straight to A&E where we met them there, to be told Sienna’s observations were too normal, she was too fine in herself and we must have been mistaken, it couldn’t have been a seizure, just a viral infection. I wasn’t there at the time of the first seizure and hadn’t seen the episode so tried to believe we had to be wrong, but with Sienna’s grandmother being epileptic, I knew we were right. We left and went home with a horrible gut feeling, Sienna was incredibly off in herself, quiet and drowsy. The following evening, Sienna lay on the bed and had a seizure right in front of our eyes. We rushed Sienna back to A&E and argued black and blue that we would not leave until she was investigated because we knew what we had seen.

Long story short, Sienna was eventually given an MRI - only to find she had in fact had a clot in the main artery to the brain that had now passed, she had suffered a stroke (hence the seizure the day before) and that had left the majority of the left side of her brain dead, and her with absolutely no use whatsoever of the right hand side of her body. Sadly it was too late as the clot had passed, we had missed our chance and the damage was irreversible.

Following this, Sienna - as well as the right sided hemiplegia and brain damage & a diagnosis of cerebral palsy - she suffered over a year of infantile spasms and epilepsy, seizing up to 10 times per day. With no relief from over 10 different medications, she became labelled as drug resistant and referred to Great Ormond Street for help as the teams in our local hospital and Noah’s Ark in Cardiff were out of options.

Sienna was placed on a last resort temporary drug which, thanking our lucky stars, gave her complete seizure control as of October 2023. Since then at almost 4 years of age, she has made slow and steady progress. She is still non verbal, she can now walk a very short distance with an obvious limp and has been able to start school part time with constant 1-1 support.

Fast forward to now, Great Ormond Street Children’s Hospital have completed their lengthy assessments and have offered Sienna a major brain operation, to entirely disconnect the damaged side of the brain in hope of minimising or even entirely eliminating Sienna’s seizures, to give her chance of an at least, more humane life. We have been reluctant as obviously this operation can be life threatening and life changing, however in the last few days there have been signs of Sienna’s seizures potentially returning, so we have jumped at the opportunity and agreed to go ahead. This operation is extremely intense and the recovery will be an extremely long process. Sienna will once again lose all use of her right hand side & therefore need to learn to use this side all over again, as well as anything her left side brain will have allowed her to learn. There will also be an almost guaranteed effect on Sienna’s visual field, however this is a risk we have to take. GOSH expect a minimum recovery period of 3 months of intensive rehab from paediatrics consultants, physiotherapy, speech and language therapy, podiatry, ophthalmology, occupational therapy and many more, for her to even begin to relearn what she has learnt up until now.

The decision between myself and Sienna’s father, and our wider family - to put Sienna in for this operation has been months of sleepless nights, tears, arguments and heartbreak, however with all the risks involved - we feel we have to take this opportunity as we could not bare to watch our beautiful, infectiously happy, loving little girl return to the lifeless shell of a child she was, back when she was having seizures, all day every day.

As much as our pride is hurt to put this fundraiser forward and have to ask for help, we have no choice - we both work tirelessly all week to try and bring in as much of an income as we can, to try and fund the traumatic time we know we as a family, have ahead. However, sadly with myself being self employed and muddling through a very tough winter in the equestrian industry - anyone familiar with the industry will understand the challenges at this time of year. Our savings have run dry, we have hit a wall and unfortunately to give our little girl the best care and opportunities for recovery, this is where we find ourselves now, asking for any help at all that anybody can offer us. We are eternally grateful for the support and backing we have had so far throughout Sienna’s life, and know the challenges that lie ahead, but we put this out in hope that any support to fund this journey for her is one less worry and pressure for us. We hope that once the day comes and Sienna goes up on that operating table, that all of our risks will pay off and in years to come our beautiful girl will have chance of an almost normal, but at least, a bit of a healthier, more comfortable life, seizure free.