Duchenne siblings, we see you

A blog by Lyndsey Kaye, Duchenne Mum

“Today is my eldest son’s 15th birthday, and it has made me reflect somewhat and come to a bit of a realisation. When as parents/carers we are given the frankly earth-shattering diagnosis of Duchenne for our child, life changes in a nanosecond. For that child, for us, absolutely, but also for the brothers and sisters of that child.

That is what I wish to write about today: the Duchenne siblings.

The whirlwind of life

I have 3 children. Riley is nearly 6, and lives with Duchenne. Since he was diagnosed at the age of 3, life has been comparable to a whirlwind. We were suddenly thrust into a world of medication, physiotherapy, night splints, and frankly more appointments with various doctors and professionals than you could shake a stick at. Naturally, we have still been fully present parents to our other 2 children throughout this, but it has not escaped my attention that they do not receive the same amount of time and physical help from me that their brother does.

It has taken me nearly 3 years to realise that this is not my fault, and it is simply because Riley’s physical needs are much more than I could have initially realised. When he was born in 2015 I naively thought I had this parenting lark fully sussed and that my children would receive an equal 33.3% share of me at all times. This was also back when I believed life was fair.

Support for siblings

As we have all become used to life with Duchenne, we have all needed support in various ways. My 9-year-old daughter now has counselling through her school, which helps her immensely. She now has her own private way to navigate her thoughts and emotions when it comes to her brother’s condition. Her school (and Riley’s too) are nothing short of amazing. They have held awareness assemblies for Action Duchenne and Lynnette and I recently attended a virtual assembly there where all the children and indeed the parents could ask questions about the condition.

Some of the questions asked by children no older than 11 were outstanding. Awareness was raised, and we broke the taboo of living with life limiting illness just that little bit. This needs to happen more in my opinion. More assemblies across more schools, raising awareness for Duchenne and changing lives. If everyone were as accepting of difference as a child, the world would be an amazing place.

Siblings: we see you

Here is the point of this blog. To my other children, the Duchenne siblings: we see you. We see all you do for your brother. When Riley falls, his sister is often there by his side faster than the rest of us. She is so protective of him.

She can often anticipate his wants and fetches items for him, so he does not have to get up. My eldest son is currently taking exams so has that pressure in his own life but thinks nothing of carrying Riley for me if needed, or when I struggle to. I am very aware that they live lives vastly different to those of their friends, and I love them even more for handling Duchenne so well.

I am one immensely proud mum.”

About the author

Lyndsey is a Duchenne Mum who lives in the Midlands with her husband, Matt and three children. Lyndsey plays an important role in the Action Duchenne team as a Volunteer, assisting with administration and volunteer management. If you are inspired to write about your life with Duchenne, please contact us info@actionduchenne.org.