A mother’s letter of gratitude

My name is Sue, I am the mother of a very special girl. We may never meet, but I wanted you to know what a profound effect you have had on my life.

My daughter Ayesha has a very rare progressive disorder of her arteries called Fibromuscular Dysplasia. Her condition caused her to suffer 3 strokes in the first 18 months of her life. We weren’t sure if she would survive, but even from such a young age her resilience was clear.

Ayesha’s strokes, caused brain damage and as result she also has Cerebral Palsy, Epilepsy and an Intellectual disability. She cannot do anything for herself and is completely dependent on her father and I. She cannot swallow, communicate or walk on her own.

We know our days with our daughter are numbered but we are grateful for every day we get together.

Although Ayesha will never be able to speak or walk on her own, I am so thankful for the vibrant and unique girl that she is. She is truly engaged with the world around her, she loves people, dancing, music, animals and books. Her smiling face and bright eyes, often hide the challenges she has had to endure in her short life, but when she smiles, we smile.

The life we had before Ayesha is a distant memory. I’ve gone from having a career to being a full time Carer for my daughter.  Instead of the usual milestones a child reaches, today I still cope with feeding, washing, changing and monitoring Ayesha’s every need. Although this is not the life we planned, we are so grateful for all that our beautiful daughter brings to our life.

We are thankful for not feeling alone on this journey, as we have had Very Special Kids by our side on this 11 year journey with Ayesha, supporting us with a counsellor, a volunteer to visit our home and play with Ayesha and regular visits to the Very Special Kids Hospice.

We are so grateful for the chance to have some time for ourselves while knowing Ayesha is happy and having fun with other children just like her.

Very Special Kids, gives Ayesha and my whole family a reason to smile, when it feels like there is nothing to smile about. I know this is only possible because of supporters like you.

So when I say thank you, I hope you know that I mean it in ways I could never truly explain.

Sue, mother supported by Very Special Kids

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