Danielle’s Story: “I had a little boy that just wanted to be normal”

14 Aug 2019

Danielle and her family and friends are fundraising for the Children’s Anorectal Physiology Service (CAPS) at The Royal London Hospital.

Here, she tells us why she’s keen to raise awareness and funds for children’s bowel issues…

“My son Ronnie-Scott is now 8. He was born at 32 weeks, weighing 3lb 13oz. He spent 16 days in intensive care and a total of 3 weeks in hospital. We were so happy when he came home.

Ronnie-Scott always suffered with tummy aches and trouble opening his bowels as a baby, we were told it was because he was premature and it took longer for his food to digest. Sometimes he could not even walk as his pain was so bad.

Who would have thought that going to the toilet can cause so much pain and emotional upset? But it can. My little boy has had chronic pain for all of his life, it has really affected him growing up and he was becoming very distressed and hardly wanted to leave the house. His attendance at school became very poor.

His medication could be quite high, and it could cause him to have accidents. He would have to wear incontinence pads or pull ups. This became unhealthy for him as he would say ‘Mummy I am not a baby, why does my body think I am?’

Difficulty getting a diagnosis

We saw a couple of consultants at our local hospital who tried making changes to Ronnie-Scott’s diet and giving him laxatives. This went on for 4 years and the pain become so bad for him I asked my GP to send me to somewhere where he could be tested further.

We were referred to the CAPS team at The Royal London Hospital and had our first appointment in August 2018. We had appointments every 3 months, having lots of tests and trying lots of different treatment.

Although the condition my son has is not life-threatening, I was finding his spirit of being a little kid disappearing, as all he felt was shame. In April, after another x-ray showed that his right side of his bowel was completely blocked, it was recommended to us that Ronnie-Scott had an ACE stoma.

Ronnie-Scott had the stoma fitted in July. A thin tube has been place directly in to the usually blocked part of his bowel and he has a small hole in his tummy where and we administer medicine to clean the bowel.

Since then, my son has not had one accident and has not had to wear a pull-up or incontinence pad. In that short space of time I have seen a massive change in him.

Specialist equipment

Without the specialist equipment used to test Ronnie-Scott, I really don’t think we would be where we are today. In 2017, CAPS used Barts Charity funds to purchase the endoanal ultrasound machine for paediatric patients which has a smaller probe than traditional imaging machines.

It’s used to view the muscles and identify the structural abnormalities that cause bowel conditions such as constipation and soiling. Children should not have to suffer like this if we can help.

Please donate to such a great cause so close to my heart - whilst most 8-year olds are usually having a great time having playdates and enjoying afterschool clubs and sleepovers, I had a little boy that just wanted to be normal.”

Fundraising for CAPS

Ronnie-Scott’s friends and family have increased their target to £1,000 and are over halfway there thanks to these creative fundraising ideas:

  • Danielle along with Ronnie-Scott’s sister Olivia and her friend Lacey did a Teddy bear Tombola at a village fete
  • Danielle’s friend Ash held a 24-hour video game stream
  • Olivia and Lacey will do a mud run in September
  • A family friend will also support the CAPS team with their Christmas charity quiz night

CAPS lead Dr Eleni Athanasakos, or “Dr Poo” as she’s known to the kids (pictured right with surgeon Mr Stewart Cleeve and the endoanal ultrasound machine), is one of our Charity Champions and has also done fundraising of her own for the service.

She adds: “Chronic constipation with or without faecal soiling, is a debilitating condition.  In the UK, 5-30% (which estimates to be 800,000 to 4.8 million children) per a year, suffer with this – including soiling, painful tummy aches, passing hard and painful bowel motions, feeling tired and generally unwell and affecting their daily life. 

The Children’s Anorectal Physiology Service (CAPS) opened in August 2016 to provide a specialised service for these children for diagnostic and therapeutic purpose to better manage their symptoms.  We have been fortunate to have ongoing support from Barts Charity who have given us the opportunity to fundraise and gain grants for specialised equipment such as the endoanal ultrasound machine.  This has allowed us to give more information to patients and their families when managing their condition."

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