https://www.1millionsteps.co.uk

We are raising money for neurosurgery and infectious disease at Great Ormond Street Hospital for Children (GOSH) to help support their research, hard-work and dedication towards administering life-saving treatment and care, as we have experienced for our daughter, Sienna.

Sienna was born in September 2018 at just 29 weeks, weighing only 2lbs 2oz (1.13kg). She needed help with her breathing initially, but remained relatively steady over her first 13 days in hospital, requiring ventilation for only one day. On Sienna’s 14th day she began to show symptoms of a virus, and an emergency brain scan revealed she had suffered grade 3 & 4 intraventricular haemorrhages (brain bleeds) and had developed a build-up of excess cerebrospinal fluid (CSF) in her ventricles (hydrocephalus). Sienna was given treatment for the virus however her condition began to deteriorate, additionally being diagnosed with respiratory distress syndrome (RDS). She remained in hospital on oxygen through the following weeks.

The virus treatment gradually began to take effect, and Sienna began to show signs of improvement. On day 53 Sienna had improved enough for us to bring her home for the first time.

Despite the ordeal she had been through in her first weeks Sienna was an absolute angel, however, as the months went by it became evident that she was struggling significantly with mobility. She had very little strength, especially in her arms, and after many visits to GOSH it was decided that at 13 months old Sienna would have surgery to insert a VP Shunt into her ventricle to drain excess CSF, helping relieve pressure on her brain. The surgery took place on 16th October 2019 at Great Ormond Street Hospital, and went according to plan.

Post-surgery Sienna began to make slow, but significant, improvements with her mobility, sitting up for the first time at 15 months old. She had boundless energy but would struggle to release it physically, so instead would chatter and gabble almost all the hours she was awake. Just days before her 2nd birthday Sienna took her first steps unaided.

Sienna continues to have regular appointments, scans and tests with both neurosurgery and infectious disease at Great Ormond Street, having her latest (6th) general anaesthetic for an MRI in July 23. Her virus and VP Shunt will be with her for life, and she’ll be a regular visitor to GOSH for years to come, but it doesn’t faze her one bit. She wears orthotic splints to help with her mobility, but still likes to take on as many challenges as she can, despite not quite having the strength or balance of her peers. She gets tired quickly and falls over most days, often multiple times per day, but every time she picks herself up, dusts herself down and carries on like nothing has happened.

We cannot thank Great Ormond Street Hospital enough for the time, expertise and support they have given to us throughout Sienna’s life, and we wish to support them by raising money for the neurosurgery and infectious disease departments in exchange for taking on a gruelling 1-million step walking challenge over just 30 days. It will involve trekking an average of 16.7 miles (5-6 hours) per day, every day throughout September come rain or shine. Sienna has promised to complete the last 100 steps alongside me.

Please support generously to this incredible cause. You'll be helping to fund state-of-the-art medical technology and pioneering research programmes into treatments and cures for rare diseases.

Thank you in advance for your support.

Jonathan, Charlotte & Sienna