Loving Eleanor- her story in Cordeaux Heights | Local business

Loving Eleanor- her story

Locality: Cordeaux Heights

Phone: +61 421 719 456

Address: Derribong Drive 2526 Cordeaux Heights, NSW, Australia

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24.01.2022 Showing the girls their bushranger heritage

24.01.2022 Nellie amazes me every day

23.01.2022 Sometimes you need a little help from your sister but so proud of how strong Eleanor has become this year #christmas2020

22.01.2022 Back to school 2020. Eleanor has had a tough summer holidays as she has struggled with the heat. Here’s hoping we get a passionate and empathetic teacher like last year.

22.01.2022 Now I know why Eleanor came home with Lego from Santa! Thanks Kidzwish

22.01.2022 Getting ready for school with second haircut ever

22.01.2022 Hi Parents, Has anyone registered their child who has rare diagnosis CHEDDA with Facematch yet? Facematch https://facematch.org.au/home has been set up to help kids like ours find a genetic diagnosis quicker. They have set up a family gene based information service which Dr Palmer at Sydney Children’s Hospital has offered to write information on CHEDDA. ... If people were interested it would be really helpful if as many parents as possible register and upload pictures of your child ideally at different ages. The technology apparently makes more accurate matches if children are similar ages. You are very welcome to nominate Dr Palmer as the doctor( [email protected] ) so she can act as the ‘verification’ step. She wants to help us with this What this means is that Facematch will be able populate the computer algorithm with kids with a diagnosis of CHEDDA. Then if another family around the world has a kid with CHEDDA where they are struggling to get a diagnosis they could upload photos and they and their doctors could be helped to make a diagnosis quicker. This could be especially useful in countries where exome sequencing is still very expensive or not available on the Public Health Service ( for example in australia it is now available on Medicare but only for kids under the age of 11). I just registered Eleanor and it took about 5 minutes. This is open to all kids with rare diseases known or undiagnosed too. Video about the project: https://www.facebook.com/FaceMatchProject/videos/2516791065057194

22.01.2022 Eleanor is starring on the giving page for the amazing doctors who discovered her genetic chromosome disorder https://alumni.unsw.edu.au/giving/CoGenes

22.01.2022 First adventure of the school holidays. No whales spotted just some rock fisherman.

22.01.2022 I meet Eleanor’s new teacher last night. Very hopefully about getting her to develop on the areas we were already working on. And found out she’s now on Primary 4!

21.01.2022 So proud of how far Nellie has come in 2020. Sitting by herself Independent feeding No massive health setbacks Survived all of mums crazy waterfall adventures

18.01.2022 Not the best video but we are so amazed by Eleanor and how she’s progressed with her sitting. Still a long way to go though

16.01.2022 So much dancing. So much photo booth action. Thanks for a great Christmas party Interchange

15.01.2022 Chilling after school #goodtimes #sisterlove

14.01.2022 Captain America Nell for superhero day at school

13.01.2022 Look who has mastered the impossible pool chair

12.01.2022 So due to covid Eleanor is having her endoscopy at Double Bay Day Hospital today. Eleanor is all smiles despite mum getting totally lost and her fasting. Hopefully will get some answers too.

12.01.2022 Bad hair in Iso don’t care

12.01.2022 Tuesday night means sister time

12.01.2022 Paddington Bear for virtual book week at school

12.01.2022 So with covid restrictions lifting Nellies dental surgery is happening today. Poor lass is tired and hungry waiting for her GA. Hoping all goes smoothly

11.01.2022 Angel sisters....sometimes

10.01.2022 My gap tooth girl

08.01.2022 Can’t believe I have an 8 year old. Only way to celebrate by dressing up (Mum too) and chocolate cake. Happy Birthday Eleanor

07.01.2022 There’s no better place to be on a rainy Easter night than with your sister #safehome #staysafe

03.01.2022 Attending the Musical Planetarium Show whilst mum works #luckygirl

03.01.2022 Nellie meeting Santa with her fabulous teacher Sarah thanks #kidzwish

03.01.2022 Escaping the heat

03.01.2022 Nellie and I just having stroll at Sulpture in the Gardens

02.01.2022 Doing the eye gaze trial with CPA. Such amazing technology. Hope we get it approved by the NDIS next year.

01.01.2022 So proud of our Nell keeping up the independent sitting this week #cheddasyndrome