Definitely Not The Waltons

Bit late to posting but last week was honoured to be invited by@Genetic Alliance to attend event

collectively isn't even that rare - 1/17 people in the UK are affected by a rare disease - over 3.5mlion people - & yet research, therapies and drug development for this community does NOT attract the likes of big pharma or genetic research because the cohorts of each disease individually tend by definition to be comparatively small 😔
As the mother of a young person with a collection of and disease this resonates hard
Collectively our voices are stronger & no one should feel isolated, alone or unheard/unseen

in one of our favourite places & indulging "sans enfant".... because ❤️ it's the 3000 day of

10 years ago today we embarked on the ... it feels so strange knowing how amazingly far genomics has come in a comparatively short space of time & yet still not having any definitive answers for our gorgeous girl. We know the names/diagnoses of various individual conditions but not the overarching diagnoses- the best way I can describe it is like having all the spokes of an umbrella but not the "wrapper" bit that keeps you dry! Still it doesn't change who she is or define her and how far she's come. She turned 17 2 days ago and we couldn't be more proud of her or delighted in seeing her living her life

Sorry for the delay in posting as I know I've had more than a few requests for pics! It's been a bit hectic and I keep trying to find more pics to capture how marvellous the day was & how truly fabulous the new Mr & Mrs Beaton are as well as both our wider families and friends were too! At this rate though, they will be celebrating their 1st anniversary before I get my posts together so sharing this for now 🥰

How it started.... 28 years later... love you Mr B!

billie eilish ❤️🥰💕♥️💖

Good news! Apparently my daughter's congenital neuromuscular disease which causes extreme muscle weakness & fatigue, arthrogryposis, hypermobility, dysmotility, gastroparesis tube fed & various other comorbidities are all magically cured! At least according to the ranty woman in the market car park & whoever left this delightful note on my car when we popped into M&S today!! Do you feel better for your 5 mins of bile?
Just because I am in the fortunate position of owning a sporty car that doesn't fit your perception of disability, doesn't mean there isn't a valid reason for putting up a disabled badge! Also not looking stereotypically 'disabled' doesn't mean there isn't an invisible one you can't see!!!
For what it's worth, we have a car for my daughter that we use with her powered wheelchair but today, with the weather being lovely and for 2 quick jobs, we thought it would be nice to take the convertible and get her out of the house for half an hour. Apparently this means it's open season for w⚓️'s to have a pop at us though 🙄
Oh& it's spelled TOSSER!!!
Shared with my daughter's full permission)

Milo would like to know if dogs can eat asparagus.... he's asking for a friend apparently.... 🤦🏽‍♀️

tell me that your parents are coming to stay for a week without telling me that.... 🤭🤗😆 🍷