Robyn was born in Newport, South Wales extremely early (23 weeks + 2 days) with an extremely low birth weight of 328g. She is the smallest baby born in Wales.

Robyn is one year old and has never been home or left hospital. She spent her first 8 months of life at The Grange University Hospital NICU. She was then transferred to Cardiff

UHW and is currently an inpatient at Noah's Ark Children's Hospital, Paediatric Critical Care Unit.

She has been diagnosed with the following conditions:

Stage three Hypoxic Ischemic Encephalopathy (HIE)

Cerebral Palsy

Dystonia

Spasticity

Hemiballismus

Epilepsy

Infantile spasms

Global Development Delay

Microcephaly

Severe apnea (obstructive and central)

Robyn is also fed via an NG tube. She is currently on the waiting list for a gastrostomy.

Robyn's brain was starved of blood and oxygen at birth resulting in HIE - a life limiting condition. Due to this she has severe brain damage.

We have been told she may not talk, see, walk, eat or live an independent life. We believe we can combat this with the right treatments and therapies and enable Robyn to live life to the fullest.

We already know how much of a warrior Robyn is and how much she has overcome. Whilst in hospital she has fought an incredible battle including getting off the ventilator multiple times, sepsis, 16 blood transfusions, lumbar punctures and abdominal surgery to name a few.

A year on, we are waiting to get Robyn home from hospital safely to start treatments and therapies which will give her the best chance of life. She will need 24 hour care once home.

The best chance of her developing is for her brain to make new pathways around the brain damage. This is known as neuroplasticity.

Her brain is most able to do this in the first years of her life so we are determined to do as much therapy as we can while her little brain is at its most plastic state.

We want to be able to provide Robyn with regular, consistent therapies and want her to attend intensive therapy courses. She will need specialist equipment such as trikes, wheelchairs and seating that will enable her to develop as much as she can and enjoy life like all children should be able to do.

Unfortunately, as amazing as the NHS is it simply cannot provide these things. We have found there are a massive range of therapies, treatments, resources and equipment out there to support babies and children like Robyn but they all come with a large price tag. These therapies need to be consistent and regular for them to be beneficial and effective.

Therapies and interventions such as intensive neuro movement therapy, brain plasticity therapy, hydrotherapy, conductive education, physiotherapy, speech and language therapy, equipment and adapted toys will come at a cost most regular people just cannot afford.

Please help us give Robyn the best chance in life.

Thank you, Dan, Chantelle & Robyn

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