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The impact of your supporton our information andsupport serviceOur year in numbers124Consultations with our TSA nurse forindividuals and families living with TSC24,88762People visited our website for informationabout TSC550TSC information pagesviewed each dayMembers supported through ourprivate online TSC discussion group1,307Comments posted in our online discussion groupQuestions posted138 92in our online TSCdiscussion groupFamilies participatedin TSA’s two recentsurveys14Newly diagnosed TSC families accessed ourParachute Packs2Issues of Reach Outpublished1,649Facebookfollowers6
HudsonTogether, we are improving TSCinformation and services for familieslike Hudson’s.Happy Hudson is just 18 monthsold but has already given hisparents many surprises! His mumKatrina says falling pregnant withHudson was just the first shock –it was not a planned pregnancy,but a happy surprise. With twoyoung girls already, Katrina andher husband Mark thought theyknew what to expect when theydiscovered they were pregnantagain. However the shockscontinued as Katrina developedgestational diabetes for the firsttime. This was followed by thedevastating and shocking news ofsuspected and then confirmed TSCin their child.At 32 weeks a growth scan showedsomething abnormal and Katrinawas sent off for an MRI to furtherinvestigate. It was then thatmultiple brain tubers were found.If Katrina had not been sent forthis MRI, an early diagnosis of TSCwould not have been made. It wasat this time that Katrina and Markheard about TSC for the first time,but it wasn’t until after Hudsonwas a few days old that his TSCdiagnosis was confirmed with agenetic test and an MRI.Katrina shares that while thisdiagnosis filled her and Mark withfear, sadness and anxiety aboutwhat their son’s future would looklike, they feel thankful they wereable to be on the alert for anyTSC symptoms from very earlyon. She says the early days werevery difficult and filled with tears -although not Hudson’s - he was avery happy baby!Because Hudson’s parents hadbeen well informed about thevarious signs and symptoms ofTSC by their expert teamat Adelaide’s Women andChildren’s Hospital, theywere aware of what thewhite patches were whenthey developed on his legsat around three months.And then, when Hudsonhad a minute-long focalseizure when he was four monthsold, his parents knew exactlywhat to do. Katrina captured theseizure on video and sent it off totheir neurologist with whom theycoincidently had already scheduledan appointment for the very nextday. Within 24 hours of Hudson’sfirst seizure he had an EEG and wasimmediately started on vigabatrinto control his seizures.An MRI done shortly afterwardsshowed that Hudson had manysmall tubers in his brain and alsotwo small tubers in the lowersection of his heart, one on hiskidney and one on his right eye.Regular check-ups showed thatthe only tuber causing concernthough was one on his brain, whichwas growing. The family continueto have a nerve-racking time‘watching and waiting’, with sixmonthly brain scans to monitor thegrowth of this tuber.Overall though, Hudson is nowdoing really well. He is a happy andsocial little boy. He loves kicking aball, climbing, dancing and chasinghis two dogs and two big sistersaround. His family feel incrediblygrateful that his development doesnot seem to be too impacted byhis TSC so far and he is meetingimportant milestones. He sat up allby himself at six months, crawledat nine months and started walking7two days after his first birthday.While there is some nervousnessaround his speech, he is makingsome appropriate babbling noisesand his parents are monitoring hisdevelopment closely.The old saying that ‘it takes avillage to raise a child’ certainly istrue for Hudson. The challengesof life with TSC have been madea little easier thanks to Hudson’ssupportive village of family, friendsand health care professionals.Katrina and Mark say they havebeen fortunate to have access to adedicated team of caring doctorswho are experts in TSC. The familyfeel confident that they are givingHudson the best opportunitiesthrough early interventiontreatments. Katrina also says thatwhat has made all the differenceto how well she has coped is howinvolved Mark is. “My husband Markis truly the backbone of our family,keeping our heads above water andhe has strength like no other”.Katrina says she wishes shehad reached out to TSA sooner.Having access to TSA’s telehealthnurse, hopeful stories aboutother families living with TSC andconnecting with another familyliving with TSC has helped themenormously. She says they arehappy to know there is such goodsupport there if they need it.
Page 1 and 2: Annual ReportTogether we can create
Page 3 and 4: Tuberous Sclerosis Australia (TSA)T
Page 5: TSA's AchievementsThis Year 19/20Pr
Page 9 and 10: Together,Melwe are improvinghealth
Page 11 and 12: Together we can achieve so muchWe c
Page 13 and 14: Our Volunteers and Regional Contact
Page 15 and 16: Donors$1000 and overBowman, AllanBr
Page 17 and 18: Financial statementsBalance Sheet a
Page 19 and 20: Where funds came fromCOVID GvtAssis

TSA Annual Report 2020

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TSA Annual Report 2020

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