Tracy and Warren Taprell were just like any other couple expecting their second child: excited and perhaps a little more confident than the first time round when they welcomed their little girl Erin into the world a couple of years previously. They dreamt about his first day at school, about teaching him to ride a bike and what he’d want to be when he grew up.

Dion was a perfect little package when he arrived on 4th May 2006. He was born into a doting family and had the world at his tiny feet. When Dion reached 8 months, Tracy and Warren realised that something was wrong and after many exasperating visits to various doctors and specialists, Dion was diagnosed with Leigh’s disease, a fatal type of mitochondrial disease, for which there is no cure. At just three years old, Dion succumbed to Leigh’s Disease, after a brave and inspiring fight.

Image of Dion

“We talk about Dion all the time” Tracy said. “We’ll always have that person missing at the Christmas table. We’ll save a spot for him and put his star on the Christmas tree.”The loss of a child is perhaps the hardest thing anyone can experience, but Tracy and Warren picked up the pieces of their lives and tried to move forward. Tracy fell pregnant again but their unborn child was diagnosed with the same terminal disease – Tracy and Warren made the heart-rending decision to terminate the pregnancy.Wanting to try again for another child, but not wanting to risk him or her having to suffer the pain and debilitation of Leigh’s Disease, they decided try invitro-fertilisation and a technique called ‘pre-implantation genetic diagnosis’. Thanks to the advances that have been made in the field of mitochondrial disease research, the gene mutation responsible for Dion’s disease was identified through testing biopsy samples. Specialists were then able to test the embryos for a defective copy of the SURF1 gene, that when inherited from both parents causes Leigh’s disease.

On the 18th November 2011, Tracy gave birth to a beautiful, bouncing – and most importantly disease-free – little boy. Thanks to advances in science and to the big brother he’ll never meet, Levi is growing into a happy, healthy little boy with his whole life ahead of him.

Tracy Taprell

April 2013