EDIE’S CLEFT

Each year at TMH we choose a local charity and support them with free venue hire for the year. This year is a little different, we’ve chosen to fundraise for CLAPA (Cleft Lip and Palate Association) @clapacommunity 🙂

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HOW CLAPA HAS HELPED US

CLAPA became a massive part of our lives last year, from the day we found out about Edies cleft diagnosis at the 20 week scan and the cleft nurse said ‘only read CLAPA, don’t Google anything’. To the prenatal support groups and the book they gave to our 5 year old daughter Ottilie, preparing her for Edies arrival.

When Edie arrived last summer CLAPA supplied us with a welcome pack and specialist bottles which you can only get from CLAPA. We’ve attended loads of online support sessions, including one just last week on weaning a cleft baby and we’ve already done a free signing course. The support carries on right through into adulthood.

Like many charities, CLAPA urgently needs our help, they’ve been seriously under funded since the pandemic, leaving their services in serious danger. So this year we’re going to try and raise as much money as we can as a little thank you from us. 

We’ll be running events and workshops down here at The Mill House with our creative little sister The Wonder Den and Bens taking part in the London to Brighton bike ride!

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EDIE'S JOURNEY SO FAR

Edie was born last July with a unilateral cleft lip and palate. She was unable to create a suction when feeding due to the gap in her mouth so needed specialist bottles. 

In November she had her first lip repair op where they closed up the gap in her lip. 

In the spring, she will have her second op to close her hard and soft palate, allowing her to form sounds and in turn helping her with her speech as she gets older.

She’ll be closely monitored by the specialist speech and language team and the orthodontic team up at Addenbrookes over the next few years. When she’s around 8-9 years old she’ll have a further op to correct her gum, where they’ll take a bit of hip bone and create a gum notch.

It’s going to be a pretty crazy ride but we are so lucky to have a team of specialists on hand to help support us and the wonderful CLAPA charity. 

You can follow Edie’s journey over at @ediescleft or keep checking back here for updates on Edie and our fundraising events!