olivers journey with bws and cdc

olivers journey with bws and cdc Oliver was born with beckwith weidemann syndrome and cri du chat syndrome

Olivers had Speech and language and occupational therapy today, it was a very hard and tiring session for Oliver,but he ...
29/05/2026

Olivers had Speech and language and occupational therapy today, it was a very hard and tiring session for Oliver,but he tried so hard.

They brought an eye gaze to see if its a way we can go forward in Oliver communicating. The aim is to have things on the screen and he then focuses in on one thing with his eyes,it says what he wants and then we do the action,eg dad give a kiss,mum a high 5.

Oliver tried so hard with this but the time he had to focus on the thing he wanted took to long before it registered, so it's whether we try again with a quicker response time.

They then also tried doing similar things like peter rabbit or sing a song but on a tablet for Oliver to press and get the instant reaction,but he was struggling with the pressing the buttons on the pad to make it work,although he did manage to press it a few times.

They are going to try some different things to try make a more sensitive touch on a tablet or similar device to see if that would help.

Oliver got his new pushchair today, it's been a fairly long process as we declined the one offered through the NHS as it...
28/05/2026

Oliver got his new pushchair today, it's been a fairly long process as we declined the one offered through the NHS as it was unsuitable for his needs so we had to wait months for an assessment at the William merrit centre to find one that we wanted. We settled on the hoggi which was £4,300 so then we had to try find a charity to help us towards the cost of it,followed by 8weeks for it to be built.

This also means Oliver is now unable to access the NHS wheelchair services for 3years so we had to find one that would last him. But we absolutely love this pushchair for him,and he looks so much comfier and fits better in it.

A few weeks ago we were given the go ahead to start trying Oliver on little tasters of food orally, as we have his stoma...
20/05/2026

A few weeks ago we were given the go ahead to start trying Oliver on little tasters of food orally, as we have his stomach on free drainage it means anything he does have should go straight into the bag. if it wasn't we would know hes then aspirating. We do still run the risk it going onto his lungs and causing a chest infection but it's the best way without a fluoroscopy of seeing if he still has an unsafe swallow.

We know he is never going to manage liquids,or large amounts of food due to how slow his stomach takes to pass food through,but even tasters like this is something I never thought he would ever manage. 💙

Oliver got the all clear for another 3months on his cancer scan 🙌 hes feeling better and stopped pulling his pegs out af...
01/05/2026

Oliver got the all clear for another 3months on his cancer scan 🙌 hes feeling better and stopped pulling his pegs out after some antibiotics for a peg infection. We finally have the pre start meeting next week to get the ball rolling on the extension, and have found a charity to help fund the remaining half of the £4,300 for olivers new pushchair so once the funds are released it will hopefully be built and ready in 6-8 weeks 🤞

💚💛Beckwith wiedemann awareness day 💚💛Something we had never heard of until early on in pregnancy and Something that defi...
06/04/2026

💚💛Beckwith wiedemann awareness day 💚💛

Something we had never heard of until early on in pregnancy and Something that definitely needs the awareness, to get the support in place as early as possible and to get those cancer scans done every 3months.

Oliver has type IC1 which brings the highest risk of a wilms tumour at 24% and from the age of 8 these risks lower. Even though he is in remission he could still develop another wilms tumour in his remaining kidney, liver or neuroblastoma making those 3monthly scans just as vital as the one that first found his tumour.

Bws is an overgrowth syndrome which can also cause hemi hypertrophy, and macroglossia. The overgrowth tends to slow down after the age of 8.

I'm grateful to have met other bws families who live nearby and we all attend james cook and the rvi so between us we are spreading that awareness to Dr's and nurses and we now dont have to constantly repeat as much to them what bws is.

31/03/2026

Olivers hand eye co-ordination is coming on amazing, hes learnt how to put the balls in the holes and press them down,but as you can see at the end of the video he gets frustrated very easily when he can't do something and the headbanging has got much worse the older hes got

Things are finally starting to fall into place, After years of fighting for olivers big sister maddie is finally startin...
25/03/2026

Things are finally starting to fall into place,

After years of fighting for olivers big sister maddie is finally starting a new special needs school after Easter, she has been for her transition days last week and loved it and made friends,im so proud of how well she handled it and she was absolutely gutted that she missed her 2 full days this week due to a sickness bug.It will be the best thing for her and she will come on in leaps and bounds.

Also after months of viewing schools and them being unable to meet olivers needs we have finally found one today that we are confident he will thrive in. So come Sept our smallest baby will be starting school....I am far from ready for this transition but I know he needs it and will enjoy it.

Our little mandalorian for World book day, thanks to family fund for the adaptive costume
05/03/2026

Our little mandalorian for World book day, thanks to family fund for the adaptive costume

Rare disease day.. a day for everyone to spread awareness of the diseases and syndromes they face everyday. Oliver has b...
28/02/2026

Rare disease day.. a day for everyone to spread awareness of the diseases and syndromes they face everyday.

Oliver has been an absolute warrior his whole life and has dealt with far more than anyone should face let alone a child but he does it all everyday with a smile on his face and we couldn't be prouder,yes he might not make them milestones normal parents can celebrate but we will continue to celebrate the small ones that may seem so irrelevant to any other parent.

Olivers been weighed today and is now 19.8kg (3.1 stone) no wonder my back aches all the time from carrying him round,bu...
27/02/2026

Olivers been weighed today and is now 19.8kg (3.1 stone) no wonder my back aches all the time from carrying him round,but he's so gorgeous 😍

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Thirsk
North Yorkshire

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