National siblings day 2022

Today is national siblings day and I wanted to introduce you to my little sister (even though she’s 19 and hates me saying it) Sophie. She loves cheese, pigs in blankets (or sausages in bacon as she calls it, no time for messing around we need an accurate description) and smoked salmon (fancy); essentially negating any good I’ve done being a vegan. She also loves YouTube, Disney, stickers, ripping up papers (there are bits of papers in my flat, she’s never been in my flat, I don’t know how she’s managed it), her family, pretending to be spies, annoying me (self-confessed), her iPad (and backup iPad and my dads ‘kindle’ – iPad in disguise – I think the backup iPad may have been my mums but Sophie has claimed full ownership), swimming, school and keeping everyone in the local area informed about what’s going on with our family (if you thought I talked about me doing physics Sophie’s got another thing coming for you).

Although it would be easy to fill a whole post about how much I love my sister that’s not what I want to talk about. Being Sophie’s big sister is a privilege but it doesn’t come without its challenges. Research done by the charity Sibs shows that there are over 2 million siblings of disabled people in the UK. Being in that 2 million will mean many different things for each individual, today I’m sharing what it means to me.

Sophie’s Diagnosis

I was two when my baby sister was diagnosed with Hurlers syndrome, a rare genetic disorder caused by the deficiency in the enzyme used to break down certain molecules. In severe cases (like my sisters) it leads to significant health issues, and physical and learning disabilities.

Left untreated Sophie’s life expectancy would have been short, 10 years if we were lucky. There is still no cure, but there are treatments.

On the 10th of September 2003, the kindness of a stranger gave my sister a second chance at life and she underwent a bone marrow transplant at Great Ormond Street Hospital, six days after my third birthday. Sophie spent a long time in hospital after her transplant, we celebrated Christmas in the ward. At three years old I waited at home whilst she battled life-threatening complications and cardiac and respiratory arrests.

I say this not for pity but context. My parents are wonderful but my childhood was not easy. Being confronted with the fragility of life so young warps your worldview. Outwardly I think I seemed a ‘normal’ child but I suffered from immense anxiety. The thought of my sister dying terrified me to my core. Anticipatory grief it’s called and it still destroys me. 

Sophie and I at GOSH after she had has her transplant in 2003.

What can we do for siblings?

Being a sibling, especially a young sibling, puts you in a rather unique position. If I was going through the same things now – though it would be just as emotionally turbulent – I would have the support of my peers and the autonomy to seek help for myself, as a child I was powerless. 

At its core, the issue is far more complex than my lack of support. Without proper resources to support people with disabilities and health issues families are left to pick up the pieces. The pandemic has highlighted just how little the current government care about disabled people (six out of ten covid deaths between January and November 2020 were of disabled people by the way). The negligence of those in charge poisons beyond those they are directly failing.

As an adult, I can look at what I experienced as a child and identify it was not normal but when you are younger you don’t have a frame of reference. I’m calling upon you to change how you talk to siblings like me. Too often adults’ first questions to me were “how is your sister?”. The intentions were not that of malice but concern however I was a child inadvertently fed the narrative that I didn’t matter unless it was about Sophie. 

Young siblings can tell you what they need when you treat them as individuals not extensions of their brother or sister. Create spaces where they can freely express what they’re going through without the worry of putting more pressure on their parents, talk to them as you would any other child, take a genuine interest in them and express compassion rather than pity. 

Though being a sibling has made me who I am, and I love my sister more than anything, no one should ever have to feel like I did and especially not a child.

Sophie’s resilience inspires me every day and my enjoyment of life is empowered by the knowledge of just how fleeting it can be. But to not acknowledge the negatives constructs an insincere reflection. I was always “such a good sister” but never a person. In every moment I spend looking for external validation there is a little girl who just wants to be enough as she is. Value the child you know with a disabled sibling a little more. Ensure they know the world isn’t as cruel as it has been to them, and they should never have to go through this alone. Give them somewhere they don’t have to be strong – I needed it.

Sophie teaches me every day to care more and live passionately. I give everything I have to everything I do because the opportunity of being is too great to limit myself to mediocrity. I am immensely grateful for the fact I have been able to watch my sister grow into the wonderful person she is, not everyone is so lucky.

To all other siblings, I hope you know just how lucky everyone around you is to know you. Be gentle with yourself and know you are important for who you are not what you do.

I’ve linked resources, videos and other things I think are important below and I’ll be continuing the conversation over on my TikTok if you want to join me there.

• Support for siblings.
• Donate to Sibs.
• Donate to the MPS Society.
• Donate to Great Ormond Street.
• Join the bone marrow register and save the life of a child like Sophie.
• A TED talk on being a sibling of a disabled child.
• If you have been affected by this and need to speak to someone here is a list of crisis helplines.