Marfan Syndrome & the Sibling Perspective

Marfan syndrome sends ripples through a family, touching everyone in its wake. No one is spared; all are “affected,” whether directly or not. While the focus often falls on parents and the child with the condition, siblings can be quietly overlooked. In this moving piece, Laura reflects on the fourteen precious years she shared with her brother Matthew, their complex, inseparable bond, and the courage it takes to continue without him.

The Courage to Continue by Laura Cross

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”

 — Mary Anne Radmacher

Growing up with a sibling affected by Marfan demands courage every day. It does not spare any family member, for to love someone is to fight their battles alongside them. The experience as a sibling of a Marfan patient is complex, sometimes overlooked, but never underappreciated.

My name is Laura, and I had 14 years with my late brother Matthew. Watching my brother navigate life with Marfan syndrome taught me strength and unwavering resilience, but most of all, courage. Not a courage that boasts loudly but that which operates silently, working tirelessly to restore my strength to face a world I had lost faith in.  

Matthew was my best friend. From writing scripts and performing plays with our stuffed animals, rehearsing musical performances, endless hours on the trampoline, constructing woodlouse ‘hotels’, growing sunflowers and listening to Horrid Henry for hours on loop – we were inseparable. I was blessed with a brother and a best friend in the same person; he filled my childhood with laughter and comfort.

Whilst my brother was my most cherished and trusted relationship, he was dually my greatest competition. Whilst every sibling relationship has its flaws, the relationship you have as the sibling of an individual with medical complications is distinctive. These battles do not cry loudly, they are silent and prolonged; a quiet breeding ground for envy as the one-sided battle for attention takes its course.

School holidays were spent in hospitals for Matthew’s routine check-ups. I had watched nearly every Disney movie there ever was but never the full run through, just the snippets I caught on the waiting room televisions. Matthews’ medical routine was our medical routine, whilst our household felt like Matthews’ household.  

Frustration became a familiar friend – frustration that stemmed from a lack of understanding. Although blessed by ignorance of the reality of my brother’s condition during my younger years, being none the wiser made it no easier to navigate emotionally.  Why would family walks would be cut short if Matthew was tired but not when I was tired?  It seems superficial, almost comical now, to recall the events that my childhood brain perceived as the greatest injustice, but in a way, I miss the girl that possessed the gift of ignorance, sheltered enough to truly believe that a long family walk was the worst thing life could throw at her.

Ultimately, the picture extends far beyond a young child’s dislike of long walks. The resources Matthew required to live his life were greater than mine. As a child, I perceived that discrepancy as favouritism. At times, I felt invisible. I learnt to be as low maintenance as possible and to mask emotion, stuck in a seemingly solidified identity: the other sibling.

As I reflect, I am grateful. Whilst I found it challenging, Matthew had a happy and enjoyable childhood. He was supported, he was understood and he was loved. For Matthew to experience a life with these privileges, there is no price that I would not pay. My parents did their best with the cards that they were dealt, as we all do every single day. Every planet has a function in our solar system, and we all had a role to play as we orbited Matthew.

The sibling relationship is inherently characterised as your built-in best friend, your shoulder to lean on for life and ultimately, your rock. But what becomes of you when the foundations of your childhood, the very person you started this life with, suddenly disappears?

It’s an indescribable experience to lose the one person you never expected. As a sibling, you inherently take for granted that they will be by your side for life. You automatically factor them into your future, assuming that they will be there the next day, and every other.

The bedroom that was once alive with laughter now sits in silence. The extended sofa hasn’t seen a dent in years whilst the Xbox collects dust. The passenger seat of the car feels strangely close to the dashboard, and I hear one less set of footsteps rushing up the stairs. The brother that used to sit across the table now rests on the ledge beside me.

 Not only did I lose my older brother, I lost myself. Who was I without Matthew? The identity of ‘Matthew’s sister’ that had previously felt like a cage had vanished and I didn’t know who to be without it.

Observing Matthew taught me the purest and strongest form of courage a person could possess and in the absence of my teacher, the true test began. The ordinary moment of applying a facemask in the bathroom on a Saturday afternoon in October 2017 was the last time my life would be the way I had grown familiar with.

My world became hollow. A world in which I suddenly become the only sibling, and the oldest. A world in which I outgrew my older brother. A world in which ‘Matthew and Laura’ became singular - ‘Laura’.

If there is one thing I have learnt, it is that each day provides us with a new opportunity. In the face of unfamiliarity, fear screams loudly whilst courage persists silently, but the smallest steps forwards have the biggest impact. The world can feel empty, and it can feel scary, but the greatest act of strength is to continue. Continuing to get up, continuing to fight and continuing to face uncertainty.

Matthew left this world in the same manner he had lived in it; he fought. He was, and still is, the greatest example of bravery and strength that I have had the privilege to witness. His legacy is defined not only by strength, but by love; love to those with Marfan syndrome, and to those who care for them.

[pictured Matthew & Laura 29 October 2007

pictured, Laura today.