Raffolux | Nov. 16, 2020
Raffolux Member, Andi Anderson, suggested the Cleft Lip and Palate Association as our Member’s Charity of the Month for September.
Around 1,200 babies are born with a cleft each year in the UK, and CLAPA aims to support every one of them from diagnosis right through to adulthood.
Having seen the fantastic support they provided for his close friend Megan Thompson and her two-year-old son George, Andi notified us of the charity in the Raffolux Member's Club & Chat.
“From George’s first smile which ended up on CLAPA Christmas Cards, to his second forever smile, CLAPA have been there for all of them.” Andi shared.
He told us: “CLAPA isn’t just an organisation, but a community network, that over the past 40+ years have helped to provide much needed support for parents, children and adults both young and old.”
Raffolux member Megan Thompson and her two year old son, George, were both born with bilateral cleft lip and palate.
“Having a bilateral cleft lip and palate isn’t as simple as some people may think.” The 22-year-old explained.
“There are the initial two surgeries that babies have, the lip repair and the palate repair.
“Before these surgeries, babies struggle with feeding.”
The stay-at-home mum added: “The majority of the time, bilateral cleft lip and palate babies won’t be able to breastfeed – they’re either fed via NG tube for the first few weeks, or they have special types of bottles so the parent squeezes it as they can’t form a suction.”
CLAPA sends out a free Welcome Pack of specialist feeding equipment to new families affected by cleft, allowing parents to feed their babies themselves.
“It really helps because you learn which bottle would be best for your baby.” Megan explained.
Cleft lip and palate can also cause hearing problems, dental issues, and speech difficulties. George had failed his hearing test three times before finally passing.
“When I was growing up I had grommets in my ears to help hear.” Megan told us.
“Hearing problems can happen at any stage of a cleft journey, it’s not something that can always be helped or cured.”
Children with bilateral cleft lip and palate are also more likely to experience tooth decay and require orthodontic treatment as they get older.
Megan has had braces twice in her life and is currently undergoing more treatment. She received around five years of speech therapy whilst at primary school, treatment that George is now about to begin at the age of two.
“When the cleft palate is affected and unrepaired, children find it hard to pronounce certain words and become nasal.”
When she was growing up, Megan didn’t receive much information about the condition.
“My surgeons were amazing, and they always told me options of surgeries if and when I needed or wanted, but I feel I only really started understanding more since I had George (2018) and found CLAPA.”
Megan discovered the organisation through a leaflet she found in the waiting room whilst at an appointment and connected with them on Facebook.
“The Facebook page is full of new parents and lots of support.”
Nicky Davis, Challenge Events Fundraiser at the Cleft Lip and Palate Association, said: “CLAPA’s Facebook support groups and one-on-one support service with trained volunteers connect people with others who will understand what they’re going through, providing emotional and practical support when it’s most needed.”
Megan added: “Everyone on the Facebook group is lovely and supportive.
“Any questions or queries you have, there will be someone to help, which I love.
“There is nothing anyone finds offensive or rude, anything and everything can be asked, and I have made several friends along the way!”
CLAPA's funding has been hit hard over the last six months, as is the case for many charities throughout the pandemic.
Nicky said: "The incredible support from our community has meant we could keep our feeding and information services running, organise virtual events, and keep bringing people affected by cleft together with our support services.”
“It is lovely to hear how much we have been able to support Megan and George." She added.
Megan herself finds it remarkable that CLAPA receive no government funding and rely a lot on the publics support.
“It means things like raffles and fundraisers are super important to them and they’re always so grateful.”
Thanks to Andi’s charity suggestion, Raffolux were able to host a raffle in which 100 per cent of proceeds went straight to the Cleft Lip and Palate Association.
“The amazing amount raised from this raffle could allow CLAPA to provide 14 more Welcome Packs or 117 bottle packs to families who need them, showing that community support really does make all the difference.” Nicky explained.
Thank you to every one of our member’s who entered this raffle, it’s thanks to you that other children like George will receive the specialised care and support that they require.
For many expecting parents, their child’s diagnosis is likely to bring up lots of different questions and emotions, especially if they have never come across the condition before
“I think the thing I would like to tell new parents is it will all be okay, the support you get is brilliant.” Megan shared with us.
“It’s also normal to feel guilty, but you will love their babies cleft smile and miss it when it's not there anymore!”