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Edward's Journey

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25.01.2022 Edward building towers with his favourite wooden blocks. No throwing the blocks now as window is fixed! #kif1a #kif1aaustralia #kif1abendigo #kif1aawareness #kif1asuperhero #terminal #nocurealwayshope #wheelchairkid #woodenblocks #supervisionrequired

25.01.2022 Edwards friends in the USA reaching out to NIH to get funding to help find a cure before we lose any more Kif1a kids

25.01.2022 New glasses for Edward - who is a cutie? Especially with an Oreo face... Rocking Ricky Martin? #kif1a #kif1avictoria #kif1aaustralia #kif1aawareness #opthomolgy #edwardsjourney #handsomeboy #blueeyes #bluesteyes #legallyblind #neurodegenerative #spectsavers @specsaversaustralia

24.01.2022 Today is International Kif1a Day. Edward features on KIF1A as one of our growing number of super heroes. Check out the link https://www.kif1a.org/blog/edwards-superhero-story/ and please donate towards our organisations mission to find a cure if you can in these challenging times! Edward loves Dorothy the Dinosaur - you cant tell much #Kif1a #edwardsjourney #InternationalKif1aDay2020 #kif1aaustralia #kif1abendigo #dorothythedinosaur #notcp #findacure #genomesequencing #wheelchairboy

24.01.2022 Edwards School had their Christmas Celebration yesterday - and guess who turned up on the motorcycle.... The Big man in RED Photo Credits: BSDS

24.01.2022 Most people will remember the struggles Edward and his parents endured in those early years. Hearing the terminology of ‘Fail To Thrive’ FTT for the first time is horrendous! And to watch your child unable to feed, unable to hit milestones like sitting, Walking and talking is not what parents envisage for their children - ever! Here is Bryce from Georgia USA. And his parents telling their story.... Sadly, the media in Australia aren’t interested in hearing of medical stories, unless there is an opposing side to the story ie NDIS, Political nature etc. We live in hope to publically help other families. To get your child tested for Genome Sequencing to test for KAND Kif1a, as that is the only way to diagnose. In Australia, most children like Edward are Diagnosed with Cerebral Palsy which is NOT Neurodegenerative. KAND (Kif1a and Neurological Disorders) the Kif1a gene cause many known disorders that look like and are similar to: Alzheimer’s, Dementia, Motor Neurone MND, Blindness, Parkinson’s, Seizures. https://www.wrcbtv.com//2yearold-from-ringgold-lives-with-

22.01.2022 Our heartfelt words of condolences are never going to be enough to the parents and family of the beautiful innocent children and adults with KAND Kif1a. Today we heard of the passing of little Giulia in Italy. Our hearts breaks for her family. Sending warm hugs across the oceans and we will remember Giulia’s family in our prayers.... We need a cure for this horrendous disease. To watch our loved ones lose their ability to function is so difficult each and every day. We see some wins then we witness more function lost in a blink of an eye. Neurodegenerative is losing function overtime bit by bit. And there is no cure - nothing to do but watch our loved ones decline. Please donate at www.Kif1a.org every little bit will help towards a cure so other children can survive this hideous cruel disease. Requiescat In Pace Giulia

21.01.2022 Today is Rare Disease Day. Edward having an awesome time at Scots Day Out in Rosiland Park, Bendigo. Edward has a new carer and his name is Edward. Edward says You Edward and me Edward he loves it. Edward and Ned are adventuring this morning, seeing all the Scottish sites in Rosiland Park Scot's Day Out - Bendigo #scotsdayout #EdwardsJourney #Kif1a #Kif1aAustralia #Kif1aBendigo #Kif1asuperhero #rarediseaseday #Rareasone #brave #braveheart #ChanZuckerburgInitiative

21.01.2022 Edward working hard at his intensive therapy.

21.01.2022 Hello local friends and family!! If any of you come across stock of the below picture milk please if you can buy one for Edward, its the only milk he will drink and in these current times he wont understand why he cant have it. We have tried him with other brands and he says Thats not nice Mummy! Its yucky! and wont have it. Thank you Catherine

20.01.2022 Friday August 7th is Jeans for Genes day. This year the funding campaign of raising funds by having people arrive in Jeans at work for a donation is hard given so many people are working from home. Edward's story is now featured on the main page of Jeans for Genes along with a few other children with rare genetic diseases. You can read a bit more about on the following link. Jeans for Genes is partnered with the Children's Medical Research Institute. I have been lucky eno...ugh to recently be directly engaged with researchers at Children's Medical Research Institute who are working with cutting edge gene editing and therapy techniques and already starting to help children with rare diseases. They believe, with funding, that they might be able to help kids like Edward too! Please consider donating on August 7 or before to this wonderful charity who is working with Children's Medical Research Institute in Sydney to give kids like Edward a chance at a better future. Maybe you can wear Jeans around home if you are working from home also! https://www.jeansforgenes.org.au/edward

19.01.2022 Edward and his Kif1a warriors.... can you spot him? #kif1a #ki1aAustralia #kif1abendigo #Kif1aSuperheros

19.01.2022 This is incredible news!!! So much to look forward to..... bring it on. https://www.kif1a.org/research/path-to-treatment/

19.01.2022 Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. #kif1a #rarediseaseday2021 #rarediseaseday #rarediseasedayawareness #kif1asuperheroes #kif1aawareness #genomesequencing #genonesequencingfordiagnosis

19.01.2022 Edward loves his wooden blocks - even better than the iPad some days. His eye hand coordination is amazing not to mention his ability to create awesome structures. #kif1a #kif1aaustralia #kif1abendigo #woodenblocks #kif1avictoria #kif1aawareness #superhero #building #creating #goodmanners #CZI #rareasone #legallyblind

18.01.2022 Great news... Thank you @rarevoicesaustralia - it has been a lonely journey since Edward was formally diagnosed as the 1st known case in Australia (#12 worldwide). We look forward to becoming involved with Rare Voices Australia. #rare #rarevoicesaustralia #kif1a #kif1aaustralia #kif1abendigo #bendigo #australia #kif1aawareness #edwardsjourney @edwards.journey #kif1asuperhero

18.01.2022 As Frozen 2 is released, we have Frozen on our lips... but what about the kids who have KiF1a? Their lives have been frozen with a Neurodegenerative mutation that robs kids of their ability to walk, talk, see and lose their lives as we have NO CURE - as yet. Kif1a has the ability to be cured in the near future but money is the one thing that we need for this to happen. Time is not on our side - lives are being lost, every little bit helps. Go to Kif1a to find the many ways to donate. www.Kif1a.org

17.01.2022 Rare Disease Day 2021 Edward has a rare Neurodegenerative gene mutation called Kif1a that has robbed him of so many things including being able to walk - he is in a wheelchair, his eyesight - he is legally blind. We hope that someday there will be a cure... #kif1a #rarediseaseday2021 #nocure #kif1abendigo #kif1aawareness #kif1aaustralia #bendigo #australia

16.01.2022 Edwards Dorothy the Dinosaur Cake Edward was so definite he wanted Dorothy ... so much love went into creating the cake for Edward, Finished just after midnight..... (perhaps a little side venture in the future )

15.01.2022 This just happened... Amazing work by the team at Kif1a.org! This association with Rare as One, CZ Chan Zuckerberg, is transformational in the journey to researching for a cure, hopefully in Edwards lifetime. But surely for next generation. And no other families go through what the current Kif1a families have been through; to be connected with each other, building a community, and able to mourn with the families who have lost their loved ones to this horrible diagnosis Well Done Team Kif1a https://www.kif1a.org/kif1a-org-is-rare-as-one/

14.01.2022 Oh Susannah, you are an amazing superhero for Kif1a and all Rare people battling to be heard.. Vote: Are you ready to make some noise? KIF1A.ORG is proud to join the #WeTackleRare movement to transform the way our society views, funds, and engages with rare disease research. It starts with one crazy idea to secure a Super Bowl ad to inspire society to take action. Visit www.wetacklerare.org/vote to vote for your favorite video and learn how to get involved. Together, #WeTackleRare. #SuperBowl2020 #kif1a #EdwardsJourneyAustralia #relentless #wecareaboutrare

14.01.2022 FaceTiming Edward is so funny One has to be consistent and determined as he keeps pressing the DECLINE button. After 5 attempts he accepted Then says hello, has a little chat and whispers I have to hang up on Nanny Raine now! His favourite game on the iPad is waiting #Covidtimes

14.01.2022 Edwards concentration whilst building his castle.... #beautifulblueeyes #buildingmemories #somuchlove

14.01.2022 Edward had a great time trick or treating last night! He loved his pirate outfit #halloweencostume #halloween #halloween2019 #piratecostume #pirate #wheelchaircostume #wheelchairpirate #wheelchairpirateship #kif1a #kif1akid #kif1asuperhero #kif1aaustralia #kif1abendigo #nocure #neurodegenerative #lovinglife #relentless #bendigo

13.01.2022 2020 School year begins. Edwards doesnt have Grades at his school like conventional schools. But what Bendigo Special Development School provides is beyond our expectations. They are amazing and Edward loves school and responds well to his education. Although Edward is legally blind he has an incredible memory. His support person on the bus teaches him to count 1-10 in different languages. Edward then shares this knowledge with his family. Three languages so far... @kif1a #kif1a #kif1aawareness #kif1asuperhero #kif1abendigo #kif1aaustralia #sds #bendigospecialdevelopmentschool #blind #wheelchairlife #legallyblind #growingup

11.01.2022 Happy Birthday Edward - Edward was so lucky to have @thewiggles sing Happy Birthday to him in Bendigo on Thursday. Thank you @emma_wiggle @anthony_wiggle @simon_wiggle @lachy_wiggle for making Edward happy. @edwardsjourney #kif1a #kif1aawareness #kif1abendigo #kif1aaustralia #bendigo

09.01.2022 Seeing Edward on stage for his 1st school concert was amazing! Tears of joy! Tears of happiness! Tears of laughter! A brilliant production. Congratulations to all the Staff, helpers and the incredible students. Every student was on stage ... most of the sets and the costumes made by the students in class.

09.01.2022 Happy 9th birthday to our big boy Edward. You amaze us everyday with what you are capable of, your strength, determination, passion and beautiful heart are only a few of your incredible qualities. We are so very proud of what you have achieved and the young man you are growing to be. Thank you for being in our lives Edward you have taught us so much. Enjoy your birthday sweetheart, we all love you very much. I hope you like your cake, it was made with so much love..... (wh...en I asked Edward 3 weeks ago what cake he would like for his birthday he told me Dorothy the Dinosaur he was very adamant thats what he wanted no matter the options I gave him.) Zoom party with family, not the same but with Covid restrictions it is the best moments we can have. #birthday #partytime #zoomparty2020 #9 #kif1aaustralia #kif1abendigo #kif1a #neurodegenerative #stillfighting #dorothythedinosaur #mummymadecake #familytime See more

08.01.2022 Edward loves his birthday gift

08.01.2022 Edward loves the Wiggles... his favourite song Fruit Salad - remembering the Banner. @capitalbendigo @triple_j @thewiggles Anthony Field - Blue Wiggle Emma Watson Lachy Wiggle Simon Wiggle Looking forward to seeing you in Bendigo soon

08.01.2022 Edward, now 9 is a bubbly energetic boy who loves to build blocks, watch videos and play with his little brother and older sister. He was diagnosed in 2014. He loves going outside in his wheelchair and meeting new people. His favorite song is Mister Blue Sky by ELO and he loves to play drums and piano while listening to the Wiggles. He loves to eat chocolate. https://www.kif1a.org/blog/edwards-superhero-story/

07.01.2022 Edward’s Kif1a friends in Queensland. twins Shay and Gemma catching up with their hero Shannon Noll. The girls are actually triplets, but Shay and Gemma both have Kif1a just like Edward here at Edward's Journey . Love your cheekiness girls

06.01.2022 If your watching the #SuperBowl today, watch out for this commercial. Susannah is Edwards #Kif1a buddy in New York, USA. Kif1a needs help to raise awareness and donations to help find a cure. Too many have lost their battle... #relentless to find a cure.

06.01.2022 Help us raise donations for a cure for Kif1a kids - buy a Selfie Elfie $20 plus postage or local Pick Up Inbox @Edwards Journey

05.01.2022 Edward had a little holiday at Very Special Kids at the weekend. He was so excited when the bus came to pick him up. We know he is in the best care when in respite at VKS. This gives us time to spend with our other children, and time for us to enjoy things that are not suitable for Edward, or not wheelchair friendly. Edwards siblings need time to enjoy different things too.

04.01.2022 Edward is Kif1a.org #WarriorWednesday this week. www.kif1a.org checkout the website and FB page a KIF1A.org

04.01.2022 Edward is so clever at Minecraft... #kif1a #kif1aawareness #kif1aAustralia #kif1abendigo #neurodegenerative #genomesequencing #genomesequencingfordiagnosis #notcp #kif1asuperhero #kif1astrong #nocure

04.01.2022 Edwards Kif1a friends in USA...

04.01.2022 Getting the word out about Kif1a will eventually find a sponsor to help us find a cure. Too many lives are being lost - we need a cure! #rare #globalgenes #relentless #kif1a #weneedacure

03.01.2022 Edward is so good at taking his medication in the morning - he just has to pick up the capsule carefully in two fingers first.... the reward is good too

03.01.2022 Sad news today! Dear little Lhassa lost her battle with KiF1A and gained her Angel Wings. Sending heartfelt condolences to Anouk and family. #KANDkids #needacure #kif1a #angelwings

03.01.2022 The BEST school photo by far! Our handsome boy #whataripper #kif1asuperhero #lookatthatsmile #kif1aaustralia #kif1abendigo #kif1aawareness #kif1astrong #notcp #genesquencing #gettested #kand #SDSBendigo #schoolphotos2020

02.01.2022 Happy 10th Birthday to my funny, energetic, crazy, resilient, excited big little man Edward. Despite your challenges you have brought us so much joy and an appreciation for life. You have taught us to be patient, kind and most importantly show love. I’m so proud of the person you are and the little man you are becoming. Don’t ever stop being you, as unique as you are with your rare Disease Kif1a, you face this obstacle with such bravery and determination. Seeing you playing with your cousins at the McDonald play ground was beautiful to watch, you weren’t letting anyone tell you you can’t do that Keep being You Love you Edward.

02.01.2022 A couple of cheeky photos that didnt load with the video To everyone at Very Special Kids. You are all amazing at what you do for families with children who have a terminal diagnosis.

01.01.2022 Thank you @veryspecialkids for taking excellent care of our boy Edward. He always loves visiting you guys and it is special for his siblings to have their time with Mum & Dad too. A happy reunited family tonight. We cant say thank you enough, it means so much to us. #veryspecialkids #Neurodegenerative #kid1a #kif1aaustralia #kif1abendigo #notcp #genesequencingshowsall #gettestednow #edwardsjourney

01.01.2022 My nephew Edward! In the water, Edward is able to move his body. You see normally Edward is unable to walk, and the water gives him the freedom to move his bod...y with more ease. This one was taken while Edward was having a little laugh and play with his mum. Edward's Journey