Two incredible mothers – who are moving mountains in the world of medical research – are running in this year’s Brisbane Trail Ultra (BTU) to help shine the spotlight on the rare and fatal genetic disease that afflicts their children. Michelle Morrice and Megan Donnell are both taking on the trails in the fight against Sanfilippo Syndrome, a heartbreaking form of childhood dementia that causes progressive and fatal brain damage. Life expectancy is just 12-20 years, and there is currently no approved treatment and no known cure but around the world emerging treatments and clinical trials are bringing renewed hope for families like the Morrice and Donnell families.
Brisbane mother and BTU ambassador, Michelle Morrice, has assembled a team of 10 fellow runners to take on the trails with her in an effort to raise funds for the Sanfilippo Children’s Foundation. Michelle’s twelve-year-old son Alec Morrice was diagnosed with the devastating disease four years ago. Mrs Morrice is the first to admit she’s no athlete but sheer grit, and the desire to see her son Alec live has seen her compete in four Tough Mudder challenges and now she will tackle 30kms solo in Brisbane’s exciting new ultra-trail marathon event.
“I know the Brisbane Trail Ultra will be a challenge but this is nothing compared to the challenge of what the future holds for my son.”
Mrs Morrice says while sadly the disease is slowly robbing her son of his ability to run, it’s actually pushing her out of her comfort zone to pursue trail running.
“Alec still loves running but Sanfilippo is beginning to rob him of this ability with frequent falls and tiredness. As I watch my son slowly losing strength in his legs, I know mine are strong and can carry me through this course.”
Just months after being diagnosed, the Morrice family joined forces with the Sanfilippo Children’s Foundation to launch the Hope for Alec (www.hopeforalec.com.au) campaign and has already raised over $120,000 for Sanfilippo research.
The Sanfilippo Children’s Foundation was formed five years ago by Sydney mother Megan Donnell, whose own two children, Isla and Jude, tragically both have the condition.
The charitable organisation funds medical research into the condition and aims to provide Australian children battling the disease with the same opportunities of access to emerging clinical treatments as their European and American counterparts.
Since inception the Foundation has committed $6.3 million to medical research and funded 18 separate research projects including a clinical gene therapy trial currently underway at the Women’s and Children’s Hospital in Adelaide. Megan will also be competing in the Brisbane Trail Ultra as part of the organisation’s flagship fundraising event, the SF Super Series. Megan recently ran 50kms in the UTA in the Blue Mountains in NSW and is looking forward to joining Michelle in Brisbane.
“Michelle and I are both determined to see the fight against Sanfilippo Syndrome to the finish line… We will both be thinking of our children –our babies– and the other 2,000 children born worldwide every year with Sanfilippo Syndrome.”
To learn more about the Sanfilippo Children’s Foundation, or to make a donation visit: www.sanfilippo.org.au. You can also follow the foundation on Facebook www.facebook.com.au
sanfilippochildrensfoundation and Twitter https:// www.twitter.com/SFCFoundtn
The Team at Brisbane Trail Ultra would like to thank Ingrid Maack, Sanfilippo Children’s Foundation, for her guest blog. Please contact Ingrid if you have any queries. firstname.lastname@example.org m: 0422 656 465