olivers journey with bws and cdc

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

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 😍

Yesterday was olivers 4th birthday. The first birthday hes ever actually been home for and not stuck in a hospital 70mil...
26/01/2026

Yesterday was olivers 4th birthday. The first birthday hes ever actually been home for and not stuck in a hospital 70miles away. We had a lovely day taking him to the deep in Hull which he really enjoyed.

14/01/2026

Hes absolutely mad but he always puts a smile on your face. Oliver has been to hell and back and yet is still one of the happiest kids I have ever met

And I can breathe again.. all clear on his cancer scan and xray for another 3months 💙 here's to hoping this year is a be...
14/01/2026

And I can breathe again.. all clear on his cancer scan and xray for another 3months 💙 here's to hoping this year is a better one and we can maybe have his first of 4 birthdays at home next week 🤞🤞

03/01/2026

Hes so clever 🥰

Xmas 2025
03/01/2026

Xmas 2025

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Thirsk
North Yorkshire

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