Parent Supporters

Our parent supporters are happy to offer support and share their experiences.

  • Eleanor Stoddard

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    I have a daughter who was diagnosed with a cleft palate two hours after birth (missing most of the hard and soft pallet). The next day she was diagnosed with Pierre Robin Syndrome. She had a nasogastric feeding tube for the first four weeks and was on oxygen for the first nine months of her life. She started on breast/ formula milk mix due to not putting on any weight she was put on a high calorie formula and weened early. We are now on operation number two for the palate. And thanks to the very informative CLAPA website and an over keen mum two months ago my daughter was diagnosed as having type 1 sticklers syndrome.   On a more personal note I have a degree in biotechnology and worked in genetic research for a number of years. My daughter is pretty awesome and learning new things every day, which keeps me on my toes.

  • Joanna

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    My name is Jo. I enjoy wild water swimming, cycling, reading and baking (with and without the assistance of my girls!). My youngest daughter, Maddie, was born with PRS and, due to a lack of local parent supporters, my cleft nurse and CLAPA encouraged me to take a more active role by volunteering as a parent supporter for CLAPA. Thanks to the fantastic support from her Cleft team, is a typical little girl with very little recollection of the difficulties she faced following birth. I would love to support you because I know first hand how difficult and emotional those first months can be and how reassurance from someone who’s been there can make all the difference.

  • Shannon

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    My name is Shannon, I'm a peer supporter for CLAPA and outside of work and volunteering I enjoy spending time with my family, I got involved with CLAPA because when my son was born with a cleft palate and PRS I felt so scared and unsure and want too help other parents on this journey. My son was born in 2017, after spending 3 weeks in Neonatal he came home with a NPA and a NG feeding tube. My son had his operation a year ago and is doing well. He also has a glue ear. I would love to support you because when he was first born I was unsure and would like to help new parents taking their first steps on their journey.

  • Liz

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    If you have recently been diagnosed or just want a friendly chat, I am more than happy help to provide support/assistance.

  • Ruth

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    In October 2016 our son Jake was born with a unilateral cleft lip and palate and a gum notch. CLAPA was and continues to be a great source of strength to me and I hope to be able to offer you some reassurance and support as you begin the same journey.

  • Joanne

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    Hi my name is Joanne, I'm married to Bobby and we have 2 children. Kailin was born in 2006 with Bilateral cleft lip and palate and Christopher his brother was born in 2008 with no cleft.

  • Carolyn

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    Hi, I'm Carolyn and proud mummy to Byron born in Feb 2013, with unilateral cleft lip, palate and gum notch.

  • Clare

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    My name is Clare and I live with my husband and two boys Patrick and Alex. Patrick was born in 2005 with a unilateral cleft lip and gum notch.

  • Dervil

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    I'm the mother of twin boys born two months prematurely in 1997 in the USA. My husband David and I moved to the UK when the boys were 10 months old. Ben was born with a cleft of the hard and soft palate and Van der Woude syndrome. Killian was diagnosed with pyloric stenosis at about 6 months so both of my boys had extensive feeding issues.

  • Nadine

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    Hi I’m Nadine, I’m married to Brad and we have a beautiful daughter Amelia who was born in 2010 with a bilateral cleft lip and palate. I am always here with lots of support & happy to answer any questions, however how big or small.

  • Sarah

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    My name is Sarah, I’m 34 years old, married, and have two daughters aged 5 and 2. My eldest, Erin, was born with a bilateral complete cleft lip and palate.

  • Maria

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    Hello my name is Maria and we have a daughter who was born with a cleft of the soft palate. As a family we have also been diagnosed with Stickler’s Syndrome type 1 along with eye and joint issues. Lily wears hearing aids and has had speech therapy.