This year we're supporting CLAPA (Cleft Lip and Palate Association)!

CLAPA became a massive part of our lives two years ago when we found out about Edies Cleft diagnosis at the 20 week scan and the Cleft nurse said ‘only read CLAPA, don’t Google anything’. 

They have supported us in so many ways since... from the prenatal support groups and the book they gave to our 6 year old daughter Ottilie, preparing her for Edie's arrival. The CLAPA FB group where we've met lots of other lovely local Cleft families, which has helped us so much and given Edie life long friends. Then when Edie arrived we received a welcome pack and specialist bottles which are only available from CLAPA, we would have been completely stuck without them. CLAPA have continued to support us with coffee groups, Q&A talks and free signing courses. 

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!

———

EDIE'S JOURNEY

Edie was born July 2022 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 from CLAPA.

In November 2022 she had her first lip repair op where the incredible surgeons at Addenbrookes closed up the gap in her lip. 

The following year Edie had her second op to close up her palate, allowing her to form sounds and in turn helping her with her speech as she gets older.  

She's closely monitored by the amazing Cleft team which comprises of specialist speech and language therapists, audiologists, orthodontics, phycologists and surgeons all dedicated to Cleft affected children.

When Edie'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. Then further orthodontic work and surgery as she moves into her teens.

It’s 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. 

Follow us over at @ediescleft