Hope for Oliver: Sanfilippo Children's Foundation | Community organisation

Hope for Oliver: Sanfilippo Children's Foundation

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25.01.2022 Christmas light looking with the kids in our matching Christmas shirts. Making memories with Ollie. Ollie unfortunately got tired and didn’t want to walk anymore so we had the cut the night short but was still a great family night #hopeforoliver

21.01.2022 This photo was taken last Christmas Eve. This was before Ollie was diagnosed with Sanfilippo. This Christmas is a lot different. We are doing everything we can to make sure this Christmas is magical and filled with happiness for our little man. I am working today so Ollie is going to daycare so I know the day is going to start with lots of tears from Ollie as he is really struggling to be away from me at the moment. It breaks my heart. We hope that after we get home he will be able to enjoy Christmas with us. #hopeforoliver

17.01.2022 https://www.sanfilippo.org.au/event/noahs-k9-fun-run/home Noah’s K9 fun run will be held on the 24th of April. Noah was a beautiful boy from Brisbane who sadly lost his battle with Sanfilippo. His family have organised this fun run in memory of Noah and what would have been his 17th birthday and to raise funds for the Sanfilippo Children’s Foundation. We have already registered and will be attending with Ollie. We would love for as many people to attend as possible in suppo...rt of the Bevan family and all kids with Sanfilippo. There is a 2.5km and a 5km track and there will be lots of fun afterwards! and of course you can bring your furry friends. You can register at the link above. We hope to see you all there!

16.01.2022 Sanfilippo is taking our baby boy bit by bit everyday. Normally after a shower I put ollies shirt over his head and he puts his arms in. Tonight I put his head in. He tried to put his first arm in and had a bit of trouble and didn’t think anything of it but then I told him to put his second arm in and he was completely confused and didn’t know what to do. He was lifting his legs up panicking because he couldn’t work it out. This is our daily reality and it doesn’t get any e...asier. It’s hard enough watching an elderly loved one loose their abilities. My grandma had dementia so I know what it’s like but watching your 4 year old loose their abilities is not something you would expect your child to be going through. Watching him struggle because he’s confused and doesn’t know what’s happening to him breaks my heart every single day. #hopeforoliver #childhooddementia See more

13.01.2022 How very true this is. We know Ollie is going to stop talking. He will stop giving us hugs. He will stop giving us kisses. But there’s no way to tell when he will stop. So we cherish everyday that he is still able to do all these things. Sanfilippo takes away all previously acquired skills. Some children loose them slowly over time. Others loose them at a more rapid rate. All we know is everyday more damage is being done and without a cure we become closer and closer to him loosing more skills. hopeforoliver.com.au #hopeforoliver

12.01.2022 We want to wish all of you a very Merry Christmas, especially Ollie’s Sanfilippo brothers and sisters and their families and the families missing their Sanfilippo babies this Christmas. We have had a joyous morning this morning with Ollie wanting to dance and sing along to Christmas music with mummy and then opening all his paw patrol Christmas presents! We hope you have a great day filled with love!... Love from The McCoombes

08.01.2022 Things have been getting tough lately. Ollie is starting to say fewer words and he’s starting to seem to have some trouble walking longer distances. And just when you think you’ve sorted yourself out and are doing ok you get a request to have an appointment with a paediatric palliative care team Picking this boy up from school and seeing his face light up and give you constant kisses puts a smile on your face though. #hopeforoliver

06.01.2022 Our little man has been really struggling with school drop offs and is getting very upset. But all that passes when I pick him up and he’s all smiles and giggles . Of course he settles down once he gets into class and has a good day. We’re so glad he’s in a place where he is really cared for and nurtured. It helps put our minds at ease. #hopeforoliver

04.01.2022 Maisy is too young to understand what Sanfilippo is and she won’t understand it for a while. One thing she does understand is that her brother won’t play with her toys with her. She doesn’t know why but she gets very upset when he won’t play with her. So when she climbs up to sit next to him and their being cheeky together it puts a smile on your face and it is a moment you treasure #hopeforoliver

04.01.2022 Rare disease day is coming Feb 28th! Sanfilippo is a rare condition. While Sanfilippo is rare on its own, there is a large community of rare diseases. Please watch the short video below! ... #hopeforoliver See more

02.01.2022 And that’s Christmas Eve done. The kids opened their Christmas Eve boxes. Ollie was extremley happy with his bubble guppies Christmas book he got! We all got matching Christmas pjs but of course family photo didn’t go to plan tonight . We hope you enjoyed your Christmas Eve #hopeforoliver