Sarah, Dave and Sean’s challenge for CLAPA

May 19, 2020

Sarah’s daughter Alice was born with a cleft lip and palate in May 2018. Below, Sarah looks back at their journey so far and tells us about some of the incredible ways she and her family have fundraised for CLAPA over the last two years.

My daughter Alice was born on 16th May 2018 with a unilateral cleft lip and palate.

We found out that Alice had a cleft lip during our 20-week scan. We went in with a set of pink and blue booties all excited to visit the grandparents and tell them whether we were having a boy or a girl. All I remember is the room going quiet and the Sonographer saying, ‘we have found two problems with your baby. I can see a Cleft lip and her heart is on the wrong side of her chest, a condition called CCAM (Congenital Cystic Adenomatoid Malformation).’

The bottom seemed to fall out of our world. All I could say as the tears began to fall was ‘is it a girl or boy? That was the moment that I felt she stopped being a girl and started to sound like a condition to people.

The next two weeks were a blur of specialist appointments. We waited 48 hours to have a specialist scan that confirmed the cleft and put some doubt on whether there actually were any more conditions. They were the longest 48 hours of our lives. But as we got back from the hospital that evening, I got a call for our amazing cleft nurse Diane.

She explained what it all meant and what the journey was going to be like, she was frank and told us it wouldn’t be easy and things were not going to as we originally planned, but that we would have a beautiful little girl who would be very well looked after by the amazing team at Manchester Children’s Hospital. She also directed me to the CLAPA website. I joined the Facebook group immediately and started to talk to other parents. It felt like a warm hug. I started to think, we can do this.

 

Over the next couple of weeks we found out the other condition was a mis-diagnosis. I think the fear of other problems made it more easy to accept the cleft.

Through the CLAPA website we found a place that would do a 4D ‘bonding scan’ so we have them a call. That really helped. Being able to see her took away the fear of the unknown. She was beautiful.

On the day that Alice was born all our fears went away. She was perfect. She had the most amazing eyes and over the coming weeks developed the most amazing smile. One I still miss today.

On the day that Alice was born all our fears went away. She was perfect. She had the most amazing eyes and over the coming weeks developed the most amazing smile. One I still miss today.

Alice had her first surgery at 3 months for her lip. That was the hardest one for me. She came back and didn’t look or sound the same. Emotionally it was hard, as she would never look the same as she did the day they placed her in my arms when she was born. But that soon went away, Alice was amazing she bounced back so quickly.

She began to sit up, and it was soon time for her palate repair at 9 months. It’s never a nice experience to hand your child over to someone but we knew she was in safe hands.

Alice unfortunately developed a temperature in recovery and we ended up staying in for a couple of days. This weakened her immune system and a fistula opened. This felt like a horrible blow, but again we received some amazing advice from our support system and began to come to terms with it.

Alice turned two last week and she is such an amazingly strong and independent little girl. I think what she has been through has defined her, made her tough. Her speech is affected by the fistula, and we are awaiting surgery number three. Unfortunately with a COVID-19 situation we don’t know when that will be but I do know with the support around us we will get through it again.

Unfortunately with a COVID-19 situation we don’t know when that will be but I do know with the support around us we will get through it again.

In terms of fundraising we have done three batches since Alice was born. In September 2018, myself, my dad and my friend Sean walked the length of the Rochdale Canal, in a day. It’s 33 miles, and it took us 12 hours.

In May last year, myself, my friend Sean, and my cousin Lisa and her husband Tris did 2 million steps in a month between us.

As we do something every year I didn’t want the current situation to stop us, so we had to think out of the box. I think this worked because this is the most we have raised so far (over £1000, including Gift Aid)!

I cycled 160 miles on my exercise bike, which is the equivalent of the coast-to-coast at 137 miles plus an extra 23 miles for each month we have had Alice. My husband Dave using his daily exercise slots to walk 17.5 km over three days carrying Alice. My friend and Alice’s godfather Sean, who has been with us on every challenge, climbed the equivalent of Mount Snowden using his stairs.

Thank you to Sarah for sharing her story. A huge thank you to her, Dave, Sean and everyone who has donated to their brilliant fundraisers!

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