Amanda and Amy’s Story

May 11, 2016

My story as parent to my beautiful daughter Amy

My name is Amanda Drake-Worth and I am married to Marc and have three wonderful children.

My daughter Amy Yuksel was born with a bilateral cleft lip and palate in 1992.

It was a complete shock to us as anomaly scans were not available then and I felt to be honest, extremely isolated and lonely as I really didn’t have any support from anyone except the hospital staff and of course my family and friends at that time.  It also felt really scary.

The biggest hurdle at the time was when after a couple of nights of Amy being home she awoke screaming every hour and I couldn’t understand why this was happening as I had changed her, fed her, winded her and did all the things that a normal mother would do.

 

Amanda-Amy-01
Amanda and Amy now

It wasn’t until I took her to the Doctors the following day that he told me her mouth was full of ulcers and that the holes in the teats of her bottles which had been given to me from the hospital, weren’t big enough, hence she had been doing her best to have her milk but hardly getting anything out.  It was at this time that I discovered she had lost quite a lot of weight and she had to go back into hospital for four days. I was so upset at this stage and really anxious.

It was at that time that I really would have loved to have spoken to anyone with experience of these issues but I wasn’t aware of CLAPA or any other parents with cleft children.

Amy then went on to have in total 20 operations, together with orthodontic appointments too, her penultimate operation being her jaw operation which she had in December 2015.  She has always bounced back from her operations and I guess that this is because I have never pretended that she would feel no pain or discomfort following her operations. This resulted in Amy building up our incredible trust as mother and daughter and to see her not only happily married now but achieving top sales in her job as a travel agent takes my breath away.

Despite Amy’s father not being there for her from a very young age, and having many challenges to face including bullying in school she is now a happy, contented, beautiful married daughter who I am so extremely proud of and I am so grateful to my husband and Amy’s step father Marc for supporting her over the last 18 years.

However it was 5 years ago that I discovered CLAPA and my whole life turned around…

I finally had found what I had been looking for.  I found what my daughter needed as we both needed to have the wonderful support of other parents who had cleft children, who had hands on experience of how to care for their children. To be able to share their stories and experiences has been phenomenal and this is when I decided to join CLAPA.

 

Amanda-Amy-02
Amy at a fundraising event for the Devon & Cornwall Branch

I originally volunteered as a Parent Contact as I absolutely love being able to help and support parents and their beautiful children ~ I really don’t want them to feel isolated and anxious as I was.

I then applied and became a committee member for the National Grants Committee. I am responsible, together with a team to oversee the budgets for the Branches during any one year.  We have a 7 day turn around of funding applications and together as a team we approve or disapprove the applications ensuring that needs are met, but also ensuring that the money we have been awarded through the Regional Fund is used appropriately.

It wasn’t until I was at a CLAPA Conference in 2013 that I discovered that the South West Area could have two branches and that is when I decided to establish the Devon and Cornwall Branch.

In March 2014 our Branch was launched and last year we raised as a committee almost £8000.  I am overwhelmed by the efforts of our committee members and also outside fundraisers and I am confident that our Branch will go from strength to strength.

We are very fortunate that we have a strong team of 10 committee members and we are currently looking for more fundraisers and volunteers to join us with a view to establishing Happy Faces Groups in Plymouth, Truro and Exeter where people can attend with their children and we can support them face to face with any issues or concerns that they may raise.  It is also a great opportunity for children to meet other children with clefts and many become great friends.

I would just like to finish by saying that CLAPA as a Charity have been outstanding.  They have treated me with the utmost respect and recognition throughout my volunteering journey with them and I have never worked for a charity where I really feel totally valued for the work I do.

I would not hesitate in recommending anyone looking for a volunteering role to join them. Please feel free to contact me at any time if you would like to know anything further about how I find my volunteering roles ~ 07742 844745 or email [email protected]

Leave a Reply

Your email address will not be published. Required fields are marked *