Isla-Rose's Hope

Our little girl is named Isla-Rose, she is almost 6 years of Age and is a beautiful little girl. We are going to tell you a little bit about her.

Although she was comfy in her mummy’s tummy, she was born prematurely at 29 weeks. Due to this she suffered PVL (Periventricular Leukomalacia) which is damage to the nerve cells in the brain that control movement and in addition to this Optic Nerve Hypoplasia, which is damage to the optic nerve in her right eye.

Being born prematurely has resulted in the weakness of the muscles in her arms, trunk and legs, cognitive impairment, developmental skills impairment and vision problems.

She is funny, determined and very independent. She is vocal, has a mind of her own and have a temper too. Although she is happy and confident she sometimes feels frustrated, becoming upset and having the occasional tantrum.

Due to the cognitive functioning it can sometimes take her longer to respond and when she is tired, her attention and listening skills can be reduced.

The impact of her illness is mostly visible in her inability to walk independently and sit unsupported for more than a few minutes.

Despite the disruption of the Covid pandemic, her strong personality has helped her to progress, something of which we are very proud of. She has learnt the alphabet and can count to 25.

She has regular physiotherapy and also has a standing frame which is helpful in building up her muscle strength.

She is fully dependent on both us and her older brother to lift and carry her around the house and in and out of the car. Her older brother also has to help her a lot to get her in and out of her bed and special chair.

Isla has two doggy’s, Pablo and Cleo, who are both very silly but they have lots of fun together.

She likes to play with water and Playdough but most of all loves to sing Elvis’s ‘Can’t help falling in love’ to her daddy and ‘The rainbow song’ to her mummy when they’re cuddling on the sofa with her favourite dolly, Alexander.

Isla has a lot of friends and she likes to spend time out in the garden but what she would really love to do is be able to walk.

Isla does not want to be treated any differently from any of her friends however given her disabilty she requires additional support.

Following lots of research and communicating with parents of children with the same disability we have discovered there is a way to potentially improve Isla Roses life.

We have recently attended an appointment at Alder Hey hospital for a surgical procedure called Selective Dorsal Rhizotomy (SDR). The objective is to reduce spasticity in both the upper and lower limbs, ultimately improving Isla's quality of life, improving mobility and and well being. Due to Isla's condition Cerebral Palsy this has resulted in spasticity which is caused by abnormal communication between the brain and nerves.

The potential benefits are as follows:

Reduction in spasticity

Reduction in painful spasms

Improvement in functional mobility and self care activities

Incresed energy and physcial endurance

SDR is a complex surgical procedure which requires an intensive rehabilitation period which Alder Hey hospital can provide with the input of a multi disciplinary team.

There are 2 categories which children between the ages of 3-9 fall in to- we are saddened to find that Isla falls in to category 2 which unfortunately is not funded by the NHS

We have therefore taken the decision to privately fund this surgery and hope with the assistance of others we will meet the required target of £20,000 to change Isla's life.

We know this is a big ask but would be greatly appreciated by both Isla and ourselves. Please help to make Isla's dream come true.