Family Stories

Content of the Family Stories and Blogs is the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.

Cam and his family

Rare Disease Awareness

Five years ago our lives were affected by a rare genetic disease.

I will never forget the day my world came tumbling down before me. The day my beautiful baby boy was diagnosed with Norrie Disease.

We could never prepare for what this disease would bring or how it would change our entire world.

But looking back on our journey, we know we are blessed to be part of a family with this rare condition.

Rare is good, rare is unique, rare is BEAUTIFUL.

I can guarantee you will never meet another child like my son, his soul will bring joy to your life forever.

Rare made me STRONG.

I am proud to care for someone rare.

The Norrie Disease Foundation raises funds for family days to provide peer and emotional support to the whole family. These are at the heart of our activities and are so important to the children, young people and adults affected by Norrie disease and their parents and siblings, to be able to speak to others in the same situation as themselves.

Cameron’s Smile – Young Carers Awareness Day 2018

Yesterday was Young Carers Awareness Day 2018.

My sister has been helping to provide care for me since the day I was born.

She understands about my conditions and disabilities and uses this to educate others.

At home she helps to keep me away from dangers, helps me to take part in activities such as sensory play and even helps aid my mobility around the house and access the environment outside.

She has supported me through endless hospital admissions and procedures and as a result of this, has sometimes had to miss time from school or extra activities.

The bond we share is unbreakable, she is patient, kind, understanding and the greatest advocate for children just like me.

The Young Carers Centre, has supported her over the last year to take time out from what can sometimes be a very stressful home life.

She gets to meet up with other children in similar circumstances, where they can share their feelings or just take time out to enjoy being a ‘normal’ 8 year old and have fun taking part in new activities.

They provided her with respite for 3 days away during the holidays and are a great support to help her maintain good mental health.

Morgan created this poster in aid of Young Carers Awareness Day, a day to pause and recognise these incredible young people and the enormous impact they have on the people around them.

This year the Support Centre focused on raising awareness of mental health amongst young carers and those who support them.

Image shows Morgans poster she created to help raise awareness. There is a drawing of Morgan and I holding hands surrounded by love hearts. She has wrote: I look after my brother. Sometimes i miss out on things other kids are doing. Meeting up with other young carers helps me maintain good mental health.

The Norrie Disease Foundation raises funds for family days to provide peer and emotional support to the whole family.  These are at the heart of our activities and are so important to the children, young people and adults affected by Norrie disease and their parents and siblings, to be able to speak to others in the same situation as themselves.