The importance of Siblings

Siblings!

Siblings feature heavily in The Rare Disease Framework. It's something that when we asked for feedback was highlighted as a strength, the exact words of one highly respected Paediatrician and CEO was "Unusual but Excellent."

So why have we included siblings? Why take the unusual step?

During a debate in Westminster Hall on the impact of Hyperinsulinism on families Sarah Hall MP referred to the diagnosis as a whole family diagnosis. The impact of a rare condition doesn't just impact the one suffering the condition but it has huge impact on all the family.

Siblings will struggle with worry, lack of sleep, disrupted social lives, missed school days due to family travel for medical needs, anxiety, lack of concentration and so much more.

Yesterday, Ibbie had really low blood sugar in the morning needing us to intervene to get it up. Her sisters were obviously worried as we sent them off to school to go about their day. They were expected to learn, to focus and to be like any other child. When in the back of the mind they knew they had left their sister that morning fighting against her own pancreas again.

The sad thing is this isn't unique to us. Families who are impacted by rare diseases experience this kind of situation time and time again for any of the approximately 7000 rare diseases there are.

Creating a safe space for the siblings of children with rare diseases is essential if we are going to allow them to feel heard, seen and supported. Without the inclusion of them in the Rare Disease Framework siblings will be left feeling isolated and misunderstood something that we have heard time and time again.

So why did we include siblings?

Compassion - to put ourselves in someone else's shoes and do something about it!

Follow our journey at www.rare4schools.org