Category: Egham

Local mum Jessica Simmons explains more about how you can help her wonderful daughter walk, run and jump like any other child

Millie was born at 29 weeks weighing just 3lbs 2oz. Having spent time at the special care baby unit at Royal Surrey County Hospital under a special lamp to treat jaundice, we faced the first major battle – a feeding problem. Her tummy would swell when she had breast milk which meant her feeds would be dropped and then started again. Eventually the swelling stopped and she was growing well.

A routine brain ultrasound revealed ‘white matter’ which we were told is normal in pre-term babies. Finally, our time in SCBU was over and we were able to go home to Millie’s sisters and enjoying having three happy healthy girls.

We were admitted to hospital several times the first winter when she contracted bronchiolitis. At the last admission she was connected to a CPAP machine to help her breathe as it was so laboured.

At home we carried on like any other family. Millie wasn’t reaching the milestones of other children, but we put this down to her being born early and that eventually she would roll over, sit and crawl.

At her yearly review we talked about how Millie’s legs were very stiff and tight which made getting her into a sitting position very difficult. A few days later we received a letter – one part stuck out – “Millie is showing signs of Diplegic Cerebral Palsy”. I stood in my kitchen reading the letter and it just felt like my world was falling apart. I felt so alone.

A consultant confirmed Millie was showing signs of Diplegic Cerebral Palsy, which causes tense muscles and spasms. Leg muscles tend to be very tight, and over time, this causes joints to stiffen reducing movement. Since Millie was diagnosed she has tackled so many obstacles, and we have too – our day-to-day lives have changed dramatically, we have had to learn various ways of aiding Millie. She has developed her own way of carrying out everyday movement.

When Millie was diagnosed we began looking for answers and stumbled upon SDR – Selective Dorsal Rhizotomy, the nerves which cause the spasticity in the legs are cut. We are due to see specialists at Great Ormond Street in September to see if it’s suitable for Millie. We have to meet the NHS funding guidelines but that’s no guarantee of getting the financial help. Since last June we have been fundraising – holding a grand ball, doing obstacle courses and quiz nights. But we need to raise a lot more. The operation isn’t a miracle cure, Millie will need to have several years of intensive physiotherapy to get the most out of this.

Millie is amazing, every day she has a smile on her face and we want to share that with everyone!