My name is Michelle Morrice and I have been given the absolute privilege of being selected as an ambassador for the inaugural Brisbane Trail Ultra event.
I am not a champion trail runner or even an amateur runner, so I hear you questioning yourself as to why I may have been selected for such a role. I have been chosen because I will accept any challenge in order to bring awareness to, and the potential of research funds for, an ultra-rare disease from which my son suffers called Sanfilippo Syndrome.
Sanfilippo Syndrome it is an inherited metabolic disorder that causes fatal brain damage due to an enzyme deficiency. The lack of enzyme prevents the body from going through its natural recycling process, causing cellular dysfunction. There are four subtypes – A,B,C and D with each corresponding to a deficient enzyme. Type A & B occurs in 1 in 70,000 births, my son has type C which occurs in 1 in 1.5 million births.
Sanfilippo mostly affects the Central Nervous System resulting slowly in brain cells filling up with waste that the body is unable to process. The brain gets progressively damaged, with children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death.
There is currently no treatment or cure for sufferers of this devastating condition and time is not on their side. Most children succumb to this disease before adulthood.
My son was diagnosed at 8 years old and we were told that there we no avenues of treatment for him. How could anyone accept this statement? After the initial shock, I realised that I could not sit idle so after researching found the Sanfilippo Children’s Foundation (setup by the Megan Donnell whose two children both have the disease) and decided to setup the “Hope for Alec” campaign as part of their greater HOPE campaign. The foundation participates in wide and varied fundraising activities and absolutely relies on diagnosed families and the community as its basis for this. To this end they have developed a national campaign called the SF Super Series and have been generously made a charity partner of the Brisbane Trail Ultra utilising this event as its flagship event for the 2019 season.
This is where I come in as our charity’s ambassador – a non-runner who will undertake this challenge, one that will physically and psychologically push me out of my comfort zone. Why? Because as I watch my son slowly losing the strength in his legs, I know that mine are strong and capable of carrying me through this course. Because as my son is beginning to get confused and forgetful, my focus is unbreakable, and my thoughts will remain steadfast on the reason I am wanting to complete this course. Because I know my son is surrounded by a community that shows such love and compassion, and that I too have the support of the same community those of you who join the fight by putting yourself through the rigors of the event and those of you who sponsor our team members to ensure that we have good reason to push ourselves to the finish. I will complete the course – of this I am certain, because I know that I will do absolutely everything in my power if it means that I have even the slightest opportunity to save my son from the pain and suffering that his diagnosis will bring.
Please consider joining our cause and registering for this event via our page so that our hope for the advancement of clinical trials to assist in the development a treatment and hopefully one day a cure can be realised. So that children with Sanfilippo can live a life that every child deserves. The Brisbane Trail Ultra Festival are offering a 10% discount to the Sanfilippo Children’s Foundation Registered Runners.