Just4Children are raising monies to fund life changing Stem Cell Treatment in the US at Duke University. Isla’s dream to live a more independent life where she would be able to sit on her own, stand, and eventually one day take independent steps.
Isla is a 2 year old girl who lives in Stockport, South Manchester. Isla was born with Spastic Diplegic Cerebral Palsy, which has impacted greatly on Isla’s life so far.
After rigorous testing and banking Isla’s little brother Leo’s cord blood at birth, Isla is now eligible to receive stem cell therapy treatment in the USA. Unfortunately, this is the nearest country offering this innovative treatment, and we want to give her every single chance possible to potentially better her quality of life.
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 Isla’s case.
Isla suffered cystic changes to the white matter damage in the first few days of her life and as a result doctors told us it was likely Isla would develop Cerebral Palsy from the brain damage present on the ultrasound imagery, Periventricular Leukomalacia. (PVL). News which was hard to swallow after what had already been a tough month.
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 and 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.
Like all parents 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 deprivation. 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!
Stem cell treatment is being trialled for a whole host of different diseases and conditions. Whilst there are no current open trials for stem cell therapy for cerebral palsy patients Duke University, the global leader in the field with Dr Joanne Kurtzberg, have an extended access programme available as a result of positive results from all their clinical trials.
The treatment is an intravenous treatment and relatively non invasive. The stem cells we have from Leo’s cord blood, have the potential to replace the damaged and non functional stem cells within Isla’s body. They have regenerative properties.
After several blood tests and genetic testing, it has been determined that Leo’s cord blood is a good enough match for Isla. As such, Islas has now been given a chance at this treatment after a long drawn out process. The treatment would be carried out at Duke University hospital in North Carolina. We need to get Isla to the US as soon as possible before she gains too much weight. The heavier Isla gets means the less stem cells per kg of weight we will have to distribute to her body.
We are in the final stretches now, and the last thing left to do is ship the cord blood from London where it is banked across to America which is not quite as simple as sending a parcel!
We are looking to raise £25,000 for Just4Children which will allow us to pay for the treatment, along with intensive private physio which can have a huge benefits after stem cell treatment. Whilst the stem cells have the potential to replace old damaged stem cells, the body will still have to learn how to use these, hence why this physio is so important. Isla has a fantastic physio team under the NHS but this will not offer Isla anywhere near the amount of Physio sessions she will need.
This money will also ensure we can take Isla’s carer to America.
It is hard to envisage exact costs at this stage, but any surplus funds raised will be used to pay for intnesive physio sessions which Isla will benefit from throughout her entire Life.
If you are able to help in these difficult times we would be humbled, and along with Isla, grateful for a lifetime. Likewise, if you are able to share and follow Isla’s Instagram page this helps us raise awareness about cerebral palsy and tell Isla’s story to more people we would be equally appreciative.
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