Running For An Angel | Chapter 2: Beppe
“Timmy?”
Mathilde looked up from the art exhibit, and scanned the clean, long corridors for her grandson. Only thirty seconds ago, Tim was right next to her. Being visually impaired, Mathilde always sticks close to Tim whenever she takes him out in public. Losing a non-verbal child in a city as big as Brisbane is one of her greatest fears.
“Timmy! Timmy! Where are you?” Mathilde cried out, adjusting the glasses that framed her strained eyes.
That day Mathilde had agreed to take Tim out on a special adventure to Brisbane’s Gallery of Modern Art. What started out as a fun day out with ‘Beppe’, a Dutch dialect title for grandmother, quickly escalated into a nightmare as she realised that Tim had managed to slip away from her line of sight.
“Timmy! Come back to Beppe!”
No response.
As her fears of losing Tim became a reality, panic began to sink in. Even if a kind stranger found Tim, he wouldn’t be able to communicate his name, a phone number, or address. Angelman Syndrome is so rare and misunderstood, would people be patient enough to help him? What if something really bad happened to Tim? He wouldn’t even be able to report the crime.
Mathilde rushed to the nearest security guards and explained that a non-verbal child was lost. They began to assist with the search. Soon Tim was located at the top of a long and dangerous staircase, looking wide-eyed and terribly pleased with his actions.
Like most six-year-old boys, Tim has an incredibly adventurous spirit that longs to explore his world without limits. He is acutely in tune with his senses; longing to see, hear, taste, smell and touch everything in his sight. While Mathilde longs for her grandson to experience life to the very fullest, her fears are that unless Angelman Syndrome is cured, Tim will be limited by his need for one-on-one supervision for life.
Over the last six years I’ve been able to observe the unique bond that Tim has with his loving Beppe. She was one of the first people to see and hold him, an unforgettable experience that has left an impression on her to this very day:
“When Timmy was born he was so beautiful and unexpected. He was pale, blonde and blue eyed. His birth hit me the way I sometimes react when I am really touched. I cried when I held him when he was just a few hours old in hospital.”
Only a few weeks after his birth, the excitement of becoming a Beppe quickly turned to deep concern when Tim was sent back to hospital after contracting a serious digestive problem. Sitting by Tim’s fragile body, and surrounded by the rhythmic beeping of hospital equipment, Mathilde spent many sombre hours praying over her grandson and asking the Giver of Life to extend Tim’s on this side of eternity.
As a professional Paediatric Occupational Therapist, Mathilde had knowledge of milestones and various childhood conditions. Very early on, she noticed that Tim was not developing normally. When at six months Tim was still not vocalising, and looking more and more like someone with Angelman Syndrome, she bravely entered the grief cycle alone:
“I could not tell anyone my thoughts as they were just too awful to say aloud. This was not one of my clients, but my own flesh and blood. I knew only too well what this would mean for Timmy, his parents and siblings.”
Although the original diagnosis was difficult to accept, over a period of time, Mathilde was able to move forward with infectious enthusiasm. Like every member of the Backhouse family, Mathilde is affectionate, warm and always filled with hope. The wrinkles around her kind eyes are reflective of a life that has been committed to smiling through trials and challenges:
“Tim and I have developed a close friendship. He has a wicked sense of humour. I watch in awe as he learns new skills and relates in new ways to people in his life. I love having Timmy over and spending time with him.”
“Tim is constantly teaching me that he loves me, not because I deserve it. I often get frustrated at him, and yet he’s so quick to forgive. Tim’s love for his Beppe is unconditional.”
Although their friendship has deepened over the years, Mathilde longs to communicate to Tim in ways that are beyond play and physical affection:
“To chat with him and find out what is on his mind would be so marvellous. I would want to answer his questions and tell him interesting things about his family. Does he know that even his 99-year-old great-grandmother prays for him every single day?”
No grandmother ever wants to see their grandchild suffer, but for Mathilde, having to watch her own children suffer, has been both difficult and humbling. While social media gives us the filtered images of life in the Backhouse family, Mathilde speaks of the messy challenges that Tim’s parents, Ed and Di, have to courageously face every single day:
“Ed and Di’s lack of sleep extends way beyond the normal two years after a newborn enters the family. Timmy wakes often and needs help for change of nappy, drink or company. There are regular and unexpected hospitalisations when Tim has seizures that last beyond 5 minutes, a terrifying experience for both the parents and siblings.”
“Ed and Di are very smart people. In the midst of their grief, they have devoted themselves to learning about Angelman Syndrome and finding out best evidence for medications, diet, housing designs, disability support structures and funding.”
One of the most inspiring things about the Backhouse family is the way they have responded to Tim’s diagnosis as a united front. Over the last six years, I’ve seen family members, old and young pull their weight in unity around the common cause of improving Tim’s quality of life, and to see Angelman cured once and for all.
Although Western Individualism has taught me that a fulfilling life is found in chasing after individual passions, the Backhouse family has shown me that there’s so much joy in making sacrifices for a collective goal. In a consumerist world that encourages me to take for myself, the Backhouse family has shown me that it’s always better to give, than to receive.
Walking with Tim, alongside the Backhouses, has been one of the most humbling experiences of my life. It’s difficult to describe on paper the love that this family has for one another. Physical touch and words of affirmation was not common place in my home that held to more traditional Eastern values, and so it always warms my heart when I see Mathilde embrace her son, and speak of him with such joy and pride:
“My beautiful son Ed has taught me so many things in life. He constantly amazes me with his resilience, attention, kindness and energy. Ultimately, he shows me what Jesus is like. Ed, keep doing exactly what you’re doing. I am proud of you.”
Mathilde Is Running For A Cure!
My nephew Tim was born with Angelman Syndrome (AS), a rare neurological disorder characterised by intellectual disability, delayed speech or no speech at all, seizures, a jerky walking style and a happy demeanour. Currently there is no cure.
The good news is that the Foundation for Angelman Syndrome Therapeutics (FAST) is working hard at finding a cure. There are currently 5 treatments in the pipeline to help cure AS. We believe that treatment could be possible in Tim’s lifetime.
In 2017, Di and Ed along with Ed’s sister, Jo and parents, Boyd and Mathilde, ran a half marathon and raised $16,725.17 for the work of FAST. As of today, they are still hoping for a cure and are requesting donations to be made to FAST here: https://cureangelman.org.au/
