Danny’s story

Est. read time: 5-6 minutes.

Most people who work for a charity develop a bond with the cause they support. For Helen Pickard, that connection is both special and personal. Helen is an Executive Assistant at East Anglia’s Children’s Hospices (EACH).

Based at Milton, her role is far-reaching and involves working alongside and supporting the charity’s directors and trustees. She started at the turn of the year and it’s a fitting development, given her family’s first-hand experience of EACH.

Ten-year-old son Danny has a rare condition called CHARGE Syndrome, which affects several parts of the body but mostly the eyes, ears and heart. He was born profoundly deaf, as well as having problems with his oesophagus, balance nerves and muscle tone and various sensory issues.

One of the things that helped with building muscle tone was his weekly swims in EACH’s hydrotherapy pool at Milton. Now, several years on, Helen proudly finds herself an EACH employee.

“EACH will always hold a special place in my heart and I feel lucky and blessed to work here,” she said. “It’s an incredible charity and provides so much care. It’s badly needed because there’s simply not enough money in the NHS.

“The pool made such a difference to Danny. He loved it and felt free in the water. He was able to float around and didn’t have to think about his balance.”

Prior to joining EACH, Helen’s career ranged from accounts to customer service and PA work. She was an events manager before falling pregnant, taking ten years out to become a full-time carer for Danny.

She knew it would be impossible to juggle employment with looking after her son but was beginning to think about returning to work when COVID struck.

“Danny’s at school a lot more now (Granta School, in Linton) and I started thinking I’d like to work again,” she said. “I did an Open University course, just to check my brain still worked, and managed to get a distinction in Child Psychology and Childhood Studies.

“It blew me away as I wasn’t expecting it but, at that stage, I still wasn’t sure where it was heading, but knew I needed to do something useful with my time. I didn’t want to work for a profit-making organisation and was keen to work for a charity.

“I missed out on another role here but, fortunately, was approached about the role of Executive Assistant. I absolutely love working at EACH. It’s a bit of payback, given what the charity has done for us in the past.

“I feel I’m able to empathise with some of the families, because we’ve experienced similar things. We’ve faced risky, complicated surgeries and come close to losing Danny. You’re always worrying so I understand what parents are going through.”

Helen and husband Paul have certainly had plenty to contend with since Danny’s birth. It was initially detected that he had trachea oesophageal fistula – an abnormal connection between the trachea and oesophagus.

It left him unable to eat and a surgical repair was carried out when he was just two days old. Then, at six months, it was discovered he was profoundly deaf.

Danny did not have cochlear nerves – the sensory nerve essential for hearing – in either ear. The only hope was pioneering surgery involving an Auditory Brainstem Implant (ABI), just starting to be carried out on children.

However, there were two major issues – it was expensive and there was little chance of having it in the UK. The only option, pending funding, was travelling to Milan, in Italy.

“We were initially told by NHS England that Danny wouldn’t benefit from the brainstem implant but we totally disagreed with that opinion,” said Helen. “We needed to try to give him a chance at hearing, because we knew he would need all the help he could get.

“So we decided to go public and start fundraising. Over two years, we managed to raise an incredible £80,000. Family, friends and the residents of Burwell really got behind us and Danny became quite a celebrity in our village.

“This was in the early days of Facebook. I set up a fundraising page and it went global, leading to national press and TV coverage. It meant we raised enough to cover the operation and various trips back and forward to Italy.

“Thankfully, the operation was a success. The whole process was incredibly stressful and I’ll never forget the day he had the surgery. I can’t bear to think about it too much, suffice to say it was a very, very long and emotional day.

“He can hear speech now, although he’s non-verbal himself. He has his own way of communicating and can make anyone understand what he wants.”

CHARGE Syndrome was relatively unknown at the time of Danny’s diagnosis. In fact, there were only a few children like him in the country when it was first discovered.

“Danny also has missing balance nerves, which means it’s been difficult for him to walk independently,” said Helen. “It’s something he’s finally mastered during lockdown, with lots of encouragement.

“Most of us walk without thinking about it. Our balance nerves do the work for us. Danny does it by visualising where walls, doors and ceiling are.

“He’s very aware of his surroundings and the space around him and that’s what keeps him upright. He’s amazing and I believe he is a super-human, in terms of the way he’s adapted.

“One of our many hospital stays was on the children’s cancer ward. It had a massive, profound effect on me. It totally changed my perspective and attitude to life. It’s made me annoyingly positive.

“Our journey has been a difficult one at times but, as parents, I believe we did what anyone in our situation would do and were determined to do whatever we could to help Danny.

“That’s what we’ve always strived to do and I feel very lucky to be Danny’s mum.”

Published in September 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

It’s an incredible charity and provides so much care.

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