Anaaya’s Story

Anaaya was the most beautiful, smiley, happy little girl.

She brought so much love, joy and happiness to the lives of us as her parents and her big sister Anaisha, as well as all those around her.

Devastatingly, Anaaya was diagnosed with a mitochondrial disorder with mutation in POLG when she was only a few months old, having been healthy up until that point.

When Anaaya was just 10 months old she had a near death incident where she had to be put in a coma for 2 weeks after a non stop seizure episode for 48 hours.

We were asked to step down to the hospice after being discharged from the Oxford hospital and this is where at Helen and Douglas House we met Francesca, our guarding angel.

Any kind of hospice is strongly associated with end of life, which is not the place any parent want to take their child when they get their devastating diagnosis.

Through our journey we realised that people like Francesca made a huge difference in our lives and changed the meaning for us about end of life care at a children's hospice.

We had someone to talk to about our worries and she helped us ensure that our daughter had all the care she could possibly have even in the comfort of our own house.

Francesca helped us ensure Anaaya was comfortable throughout her journey.

Her focus was not only to give Anaaya the care she needed but also to help us as a family to cope with her changing condition. She made us think and choose all the best possible options available for Anaaya and us as a family, whose focus was to get Anaaya to feel better.

I feel it is the people working in the children's hospice that give the perception of what it is.

Having people who are empathetic to families going through such a big turmoil is a big help for the families. Just to know that there are more pairs of hands just like extended family takes a lot of pressure off from the parents and immediate family members impacted by the end of life care.

I wish we had not wasted 6 months trying to do things on our own but could have reached out to our hospice earlier when we got our diagnosis.

If there was any advice I could give to people that know or want to help families in a similar situation to ours it would be:

1) The first priority has to be to keep your child comfortable, happy and give a normal life as much as possible. So help the families to achieve that.

2) Families need to be made aware of all the support and help available .For the families – don’t try to do everything yourself. There is lot of support out there for day to day care. Use that available care to be able to spend as much time as possible with your child giving them your love and attention.

3) Guide families and help them in their decision making process. It takes a long time to process the diagnosis and the decisions that are needed to be made through the journey. Don't leave them on their own when the time has taken away their loved one, this is when families need the most support.