Running For An Angel is a blog series that documents the life of Tim Backhouse who was born with Angelman Syndrome. Each chapter sheds light on what life is like in a family with special needs. Although Angelman Syndrome has robbed Tim of his voice, I believe in the day when he will be cured, and I will hear the words that are pressing on his heart. Until that day, this story is unfinished.
Although on face value, Tim appears different to other boys, in many ways he’s very similar. He’s just another young boy who loves trains, buses, going to the playground, swinging on his hammock and watching videos on his iPad. He just takes a little longer to process things, but those who are patient enough to spend time with him, always walk away inspired. Read the full story here.
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. Read the full story here.
In spite of the daily challenges, Josh demonstrates to me, a child’s capacity for love and compassion. I love the way Josh has learned to forgive Tim whenever he pulls a little too hard on Josh’s hair. I love the way Josh slows down to include Tim in play, a trait that isn’t easy for a young boy with such a competitive and high-achieving spirit! Most of all, I love the way Josh respects and honours his brother, and in doing so, teaches others to do the same. Read the full story here.
One of the hardest things about grief and loss, is when we cannot see the purpose to our pain. For Di, knowing God and being able to surrender all the unknowns of motherhood to Him in prayer, has given her a sense of peace that transcends circumstances. Chapter 4 is a dedication to every Special Needs mum this Mother’s Day. Read the full story here.
If there was an explanation for Tim’s perseverance and determination in life, I would have to pin point it to the example of his father. In the eight years that i’ve known Ed, I am always surprised by his endless abundance of zest and energy. Despite tackling the daily challenges of AS, Ed loves life, and has an infectious ability to inspire gratitude in the hearts of all who meet him. Read the full story here.
The Backhouse Family Are 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.
On May 20, Di and Ed along with Ed’s sister, Jo and parents, Boyd and Mathilde, ran a half marathon and raised $16,725.17 to support the work of FAST. I would like to take the opportunity to thank anyone who read their story and donated to the cause.