Isla's wish

Hi, my name is Isla Rose.

I am almost 4 years of Age.

I’m going to tell you a little bit about myself.

Although I was comfy in my mummy’s tummy, I was born prematurely at 29 weeks. Due to this I 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 my right eye.

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

I am funny, determined and very independent. I am vocal, have a mind of my own and have a temper too. Although I am happy and confident I sometimes feel frustrated, becoming upset and having the occasional tantrum.

Due to my cognitive functioning it can sometimes take me longer to respond and when I am tired, my attention and listening skills can be reduced.

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

Despite the disruption of the Covid pandemic, my strong personality has helped me to progress, something of which my mummy and daddy are very proud of. I have learnt the alphabet and can count to 14.

I have regular physiotherapy and also have a standing frame which is helpful in building up my muscle strength.

I live with my mummy and Daddy, have an older brother and two sisters who I love very much and who I have lots of fun with.

I am very reliant on my mummy and daddy who have to lift and carry me around the house and in and out of the car. My big brother also has to help me a lot, getting in and out of my bed and special chair.

I also have two doggy’s, Pablo and Cleo, who are both very silly but we have lots of fun together.

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

Mummy wants me to be a Doctor but more than anything she wants me to be myself and become who I want to be, I would quite like to have a go at being the Queen.

I have a lot of friends and we like to spend time out in the garden but what I would really love to do is ride a bike just like they do.

I do not want to be treated any differently from any of my friends but sometimes I just need a little bit of additional help and support.

I sometimes look out of the window and laugh at my friends having fun on their bikes and wonder what it would be like to be able to join in.

I have a specially adapted bike in mind but need a little bit of help in making my dreams come true. My dream bike has to be specially made to measure to fit my special needs and ordered well in advance but would love it in time for Christmas. So just need a few friendly people to be kind and make my wish come true.