Teghan and Bree are both carers of eleven-year-old Skye Robson who is battling Sanfilippo. This August the pair will be walking 15,000 steps a day in the Steps for Skye challenge. Covid-19 restrictions have not dampened their desire to help make a difference to the childhood dementia, Sanfilippo Syndrome.
Teghan used the Foundation's 'Choose your own Event' function to create a challenge and has rallied a team of 12 fellow steppers. She shares how Skye has forever touched her heart and is her ultiamte motivation below.
What inspired you to fundraise for the Sanfilippo cause?
"Myself and a friend who also works with Skye have always wanted to fundraise for Sanfilippo and help raise awareness as Skye means so much to the both of us. It’s such a cruel disease and a cure is much-needed."
How has caring for a child with a terminal illness changed your view of the world?
"It has made me realise that life is too short! We need to make each day worth living and enjoy every day especially the time I spend with Skye."
What attracted you to such a role?
"I started working with Skye roughly 5/6 years ago and we’ve been stuck to each other ever since. Skye’s family have been welcoming towards myself and even my own family who love Skye just as much. Skye is apart of our family and she makes this role so much fun!"
What inspires you? What makes you sad?
Skye and her family inspire me! They are all so amazing and prove that anyone can get through anything life throws at them. Sanfilippo Syndrome makes me sad. Knowing this cruel disease is fatal and that there is currently no cure or approved treament for current Sanfilippo sufferers and for the future children who will be born with this disease."
What do you want the wider community to understand about Sanfilippo?
"I would love people to be more educated on Sanfilippo and know how serious the condition is. Not many people know much about it and don’t know the extent of how serious it is. It’s also a condition where you need to know so much about the person you know/work with and how complex it can be. I would also would love people to accept everyone for who they are and how much fun, joy and love Sanfilippo sufferers can give.
Tell us about your challenge and why you've decided to do it
"Myself and Bree are walking 15,000 steps a day for the month of August. We have always wanted to do some kind of fundraiser for Sanfilippo and help raise as much awareness as possible. Due to COVID we were limited to the things we were able to do. At the moment we are both enjoying getting out and walking or running so we thought why not give ourselves a big step challenge for a whole month. Anyone can join in with us. We know so many people who love Skye as much as we do and they are the ones who have signed up to do this with us! We are so grateful for the support we have already received."
How's your training?
"It’s going well! We are both trying to get close to our goal already and figure out how much we roughly will need to do a day to be able to reach our goal. It’ll be a challenge but it’ll be worth it!"