It’s difficult to know where to begin. I was blessed with three beautiful, loving children whom I adored.
Robyn came into this world, on 14th February 1994 best valentines present ever. She became my everything. Holding her tiny form, she shone like the brightest star, illuminating my life from the very beginning with her unique and radiant character. Even in her early years, despite the challenges she faced due to global developmental delay and hypotonia, she met every obstacle with an incredible smile and the cheekiest of giggles, determined to overcome all expectations.
I remember so clearly before she could walk, her older brother Adam would spend countless hours singing “Row, Row, Row Your Boat,” her favourite nursery rhyme, gently rocking her. Then Luke arrived, and in her eagerness to keep up with her beloved brothers, Robyn learned to shuffle and eventually walk. They were an inseparable trio, always looking out for one another. In Robyn’s eyes, Adam and Luke were her heroes, incapable of any wrong.
On Robyn’s seventh birthday, our world was shaken by the diagnosis of Takayasu arteritis, a rare condition. We were told she might only have five more years. Yet, with her remarkable spirit, Robyn defied the odds, surpassing every hurdle. My pride in being her Mum grew even deeper. She absolutely adored Christmas and the magic it brought. I have such a vivid memory of finding the three of them hiding, hoping to catch the Christmas Fairy. My own Mum even organised a fundraiser so we could take Robyn to Lapland when she was ten, a trip that filled her and our whole family with such joy as she met Father Christmas.
During Robyn’s frequent hospital stays, her brothers and I were always by her side. These times together, especially given Robyn’s unique way of understanding the world, brought us even closer; we were a complete and devoted family. Robyn and Luke shared a particularly special bond; she often seemed like his shadow, and they were rarely apart.
Robyn possessed such an incredible zest for life and an unwavering will. Once her mind was set, nothing could change it – some might call it stubbornness, but to us, it was simply our Robyn. She loved parties and music, a passion amplified by Luke’s love for dance and music. As she grew older she also had a sweet and innocent flirtatious side. (my “little tartlet,” as I’d affectionately call her), she seemed to have a special sense for any handsome man or man in uniform, and her infectious smiles, giggles, and cuddles were simply irresistible.
Our hearts were shattered on January 24th, 2016, when Luke was tragically taken from us in a car crash. Our world turned grey, and an immense wave of sorrow engulfed our family. We navigated the difficult aftermath, holding onto each other in the profound void he left. We did our best to explain to Robyn, but it was as if we were saying Luke had gone to the shop. For years, she wouldn’t speak of him, as if it was too painful. But with much love and support, Robyn, Adam, and I found a new path forward, although our family felt forever incomplete. the BBC made a documentary about Luke’s crash and police investigation, called car crash who’s lying this helped us as we got to share Luke’s life with everyone but most importantly we got to talk about him. He had recorded a song called heart of stone was released. Then on Luke’s 21st birthday, we placed his ashes in a large pot with a cherry blossom tree, fulfilling his wish. Every birthday, we tie a balloon to its branches, and at Christmas, Robyn always insisted on decorating his tree she would also hang Luke’s stocking along with ours on Christmas Eve.
It was truly remarkable to see the different sides of Robyn’s personality in various situations. She was hardworking and determined to learn new things, confident and outgoing, even mischievous, yet she also had a lovely shyness and a constant desire to please. Although Robyn needed extra care and support throughout her life, it never felt like a burden; it was simply our Robyn, and having her in our lives was an absolute honour. We love her beyond measure.
Robyn decided she would like to revisit Lap Land so in December 2024 my Husband and I made her dreams come true once again. She loved going on the snowmobile and on the Huskie dog sledge and her face when we went to see Father Christmas will be a memory we treasure for the rest of our lives.
Last Christmas, Robyn became unwell, lacking her usual joyful spirit, and as her Mum, I knew something wasn’t right. Given her weakened immune system, she was immediately started on antibiotics. On Monday, January 6th, she was admitted to the hospital with dangerously low oxygen levels and transferred to intensive care. Robyn had contracted the flu and needed to be put on life support. Heavily sedated, she showed no signs of improvement. By the Wednesday, the doctors told us there was nothing more they could do. Our hearts broke; the thought was unbearable. As a mother, facing this again felt impossible. But then, one of the doctors contacted the ECMO team at St Thomas’s hospital. On Friday the 10th, they decided to give Robyn a chance, placing her on the Extracorporeal Membrane Oxygenation machine and transferring her to St Thomas’s in London. I immediately travelled to be with her, my only thought was that Robyn had never been alone, and I wasn’t about to let that happen now.
Over the weekend, Robyn remained sedated, but by Tuesday, she appeared to be improving. Throughout the week, they reduced her sedation enough for her to open her eyes and nod or shake her head in response to questions. I stayed by her side, constantly encouraging her, telling her, “You’ve got this, and I’ve got you.” I repeatedly told Robyn I loved her, and when I asked if she loved me she would nod in reply. She would even pick the music she wanted to listen to by nodding or shaking her head it was usually Disney. We even started making plans to decorate her room with Stitch, and she chose the wallpaper she wanted. That familiar cheekiness returned; she’d shake her head when asked if she loved Adam but then give the biggest nod. Robyn continued to improve so remarkably that even the doctors were amazed. They decided to try weaning her off ECMO and were confident she would be off both ECMO and the ventilator within a few days. Tragically, on January 22nd 2025 Robyn suffered an unexplained cardiac arrest, and my precious girl was gone. We are utterly devastated that our family has had to endure the loss of another child.
Robyn was such an essential part of our lives, our beloved third wheel. Her absence feels like a missing heartbeat; our family’s melody has lost its rhythm once more. Every moment without her feels like an unfinished sentence, our story abruptly paused. We long for Robyn to return and bring back the magic she held. I miss the sound of her voice, the way she’d call out “Mum” as if I belonged solely to her (and in so many ways, I did). It’s not just her presence we miss, but the warmth and fierceness of her hugs and the way her laughter could transform ordinary moments into something unforgettable. Once again, we have to navigate a path back to some form of normality, a journey we are still on.
We have found some comfort in the fact that our Robyn defied all expectations and lived to 30 years old. We are incredibly grateful to the team at St Thomas’s for giving me an extra twelve precious days with my extraordinary daughter. I believe she decided to take her brother Luke’s hand, perhaps not fully understanding the consequences. We also find comfort in knowing that Robyn is now reunited with Luke, who adored her so deeply. In my heart and mind, I can picture them holding hands, laughing, walking beside us forever.
We intend to reunite Robyn’s ashes with Luke’s on 23rd January 2026 the day between their anniversary’s I believe that is what Robyn would want.
One of the most important lesson we have learned as a family and individually is never put of something that can be done today who knows what the future holds.
Updated on: 22 May 2025