Story
My first grandchild, Isla was born at 27 weeks gestation as a result of mum being admitted to hospital at 24 weeks having suffered a placental abruption. A lack of oxygen at an extremely premature birth can often cause seizure activity and as a result brain damage as it did in Islas case.
The first few weeks of Islas life were touch and go - she was ventilated immediately at birth so her body could recover, and was eventually weened onto oxygen before learning to breathe on her own.
Isla did really well during her time on the neonatal care units of St Mary’s in Manchester and Stepping Hill in Stockport. Whilst the brain damage could not be reversed Isla never ceased to amaze us day after day. She spent 107 days in hospital before being discharged home.
At this stage, there were still lots of unknowns. We didn’t know the severity of Islas cerebral palsy, she had a couple of on going heart issues which we continued under cardiology for, along with sight / hearing tests still to be passed. We knew her journey ahead would be very challenging.
Fast forward 2 years and Isla has been discharged from Cardiology, has passed her new born screening tests, but is more physically challenged than we ever imagined. Isla scores 3 to 4 out of 5 on the Gross Motor Funciton Classification System. The GMFCS, is a five-level classification that differentiates children with cerebral palsy based on the child's current gross motor abilities, limitations in gross motor function, and need for assistive technology and wheeled mobility.
Isla can’t sit independently, crawl or walk. Spastic diplegic cerebral palsy means the gross motor function of her legs is what is mainly affected, whilst still affecting parts of her gross and fine motor skills elsewhere in the body. The messages from her brain to the rest of her body are essentially distorted causing increased and reduced muscle tones out her Islas control.
She is also currently non verbal, and has suspected autism which makes communication with a very frustrated little girl extremely hard - she just wants to be able to do what other two year olds can do.
I'm raising money to give Isla the opportunity to live as independent and happy life as possible. All we want is for Isla to be happy and despite the odd good day, Isla is quite irritable, upset and uncomfortable most of the time, due to severe spasticity/ dystonia, severe constipation and sleep deprevation. Isla doesn’t sleep much because her body is constantly waking her up with involuntary spasms which she cannot self settle from. Yes she has her good days, just not many!
So whilst every day is a challenge for mum and dad we still have some hope. Stem Cell treatment is available in the USA and the clinical trials have showed positive results. Isla is a match with the stem cells taken from her baby brother, Leo, and after months of further test she has been accepted by the global leader in this field of research, Dr Joanne Kurtzberg. However, the treatment is costly, hence this fundraising.
We have a window of opportunity to have Isla treated because of the necessary ratio of active stem cells to weight - and Isla is slowly getting bigger.
If you are able to help in these difficult times we would be humbled, and along with mummy, daddy and Isla, grateful for a lifetime. Likewise, if you’re able to share and follow Isla's Instagram page this helps us raise awareness about cerebral palsy and tells Isla's story to more people and for that we would be equally appreciative.