STCfit Charity Day Lift Off Dec 08 2019, Body Revival Strength & Performance, Sunday, 08. December 2019

The STCfit Charity Day is here,
The Charity – Congenital Disorder of Glycosylation
THE DAYS SCHEDULE 
9:00am Arive and warm up 
9:15am: GROUPS WORKOUT - We'll kick off with a group workout the STCfit way, you may even get to train side by side with your trainer....
9 15 am - 1ish: STCfit LIFTERS MEETING - all lifters must be in antendance to lift 
10 am - 1ish an unofficial lifting session. See who has the best pound for pound Squat, Bench and Deadlift total in the STCfit family. (will be using the WILKS system for those who care) (This event is invite only due to safety – but our lifters LOVE having people cheering them on so we urge you to stay and enjoy the show) 
POST DEADLFITS - The score's will be tallied and the winners will get a nice chaulky pat on the back we’ll clean up and head for burgers We cant wait to get all the STCfit family in one place. Please grab your ticket as ASAP spaces are limited. One of our own needs some help, STCfit Team member Amy and her partner Michael tell their story below
"Congenital Disorder of Glycosylation is a rare recessive genetic condition. There are currently 36 subtypes of CDG and it affects around 1 in 100,000 babies born. Those with CDG cannot properly add sugar building blocks to proteins. Every part of the body requires glycosylation to work normally, which explains the many different health problems that affect people with CDG.
The extent of impact CDG has differs greatly between person to person and subtype to subtype. The knowledge of CDG is still developing and it’s medical understanding only began in the 1980s. As such it is difficult to determine true statistics on a large sample size. Fatality rates can be high, with a significant number of deaths in those under 3, however there are some with the condition that live well into their 20s and 30s. Current research is still in the early stages. There is a partnership working together in Osaka to bridge the gap between identification and treatment, and if successful will result in the first treatment for those with CDG. However at this stage, there is no known cure, just symptom management.
Our story was atypical for those parents whose child has been diagnosed with CDG. Generally, those with CDG have hypotonia, failure to thrive and developmental delays. Louis was strong, definitely enjoying breastfeeding and meeting development milestones. At 3 and a half months of age Louis began experiencing seizures. We went from bathing Louis at our home in Canberra to 48 hours later being airlifted to Sydney Children’s Hospital in Randwick.
From July through to September of 2018, the ICU became our home. Louis is one of 40 recorded cases with his subtype, and the limited statistics on the other 39 aren’t promising, particularly at his age. Although we were incredibly well supported medically in Canberra, and from Sydney, we both felt we needed to be closer to our family and friends both for us and for Louis to create memories with those who mean so much to us. We moved back to our hometown of Shepparton in late December last year. Our little man has been proving everyone wrong since the diagnosis. We don’t really know what the future will hold or what Louis will be able to achieve, particularly given his age and limited information on his subtype.
We have been and continue to help him as much as we can to allow him to reach his full potential. Louis’ biggest obstacle at present is the hypotonia that he suffers, which is a side effect of his anti-seizure medication and a component of the condition. This makes moving and reaching milestones difficult. He also still suffers from seizures, however they are unpredictable in nature and therefore are managed with medications. Some days are better than others and the love and support we receive from our amazing friends and family makes all the difference, every day we have with him is a blessing."
After being offered the full days funds, Michael and Amy have asked we donate atleast 50% of what we raise to the CDG charity, so we'll be splitting what we raise directly with the family and foundation. Let's make this our biggest one yet and get behind out fellow TeamSTCfit Members 
Much Love - The Trainers

Sunday, 08. December 2019, Body Revival Strength & Performance, STCfit Charity Day Lift Off Dec 08 2019

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