Clare, mum to Dannan, says,
“Our bundle of love arrived six weeks early at 34 weeks. Everything seemed normal until Dannan was five weeks old when in the early hours he didn’t take his 1 am feed but took his morning one. After that he proceeded to go downhill; I wasn’t aware of what was normal or not just yet. We were advised to go to A&E, which is where our worst fears came true. We were then blue-lighted to a children’s hospital.
We spent three gruelling days in ICU, hearing words like meningitis, sepsis, group B Strep, lumbar puncture and MRI. Dannan was on extremely high doses of pain relief and medications. He was breathing and being fed through a tube. For him to leave ICU he needed to be stable. I remember hearing Ariana Grande’s song ‘One Last Time’. I can still see the radio sitting on the bench and still remember that feeling begging god, my granny anyone up there to help our wee boy, please let me be the one to take him home. I know the hard work of the doctors and nurses around us saved my boy, but it didn’t stop me from praying, and I didn’t realise I was that religious.
On day three of him being in NICU, he was off both tubes and taking milk. He no longer needed ICU. He then spent a further three weeks in hospital, where he also had colic and reflux from all the medications. We were then transferred to a different hospital, where he stayed for two weeks before being allowed home with antibiotics for another two weeks.
With my partner and my mum, we all worked together to bring that smile out of our boy. Six years on, he is the happiest wee boy, but he is unable to do most daily activities himself. We haven’t met the ‘normal’ milestones of crawling, sitting, walking or climbing without help, but we make our milestones. He can now sit for more extended periods with me right beside him. Dannan uses a high-low chair, wheelchair, stander, walker, specialised bed, handling belt, splints for his feet during the day and for his hands at night and a lycra suit to help with tone.
He is on an array of medication for reflux, constipation and drooling (at the minute, he’s on a waiting list for an operation to combat that). He’s also started new medication recently to help with tone, so he has a lot going on, but looking and being around this wonderful, loving, happy, eager child, you wouldn’t know he needed all this help every day.
So, as you can see, it has been a journey and a struggle for Dannan. His official diagnosis is ‘severely learning disabled with cerebral palsy and dystonia’. For our family it has been a struggle to learn and adapt; I still struggle with what we have lost, but what we have gained I could never have imagined, and in a lot of ways he was meant for us. We are determined to give him the best life possible, just like any other child, if not better! His diagnosis and, on paper, his challenges scared us at first, but they do not portray this happy wee chappy – that’s my job to show everyone how amazing he truly is.
I participated in the GBSS Squats Challenge – 3,000 squats got us through a tough month in lockdown. We had some laughs dressing up and squatting! I raised £750. This year, we organised a charity walk showcasing our wee Dannan’s strength! We called it ‘Dannan’s Dander’, and, with our help, he made it to the top of Kilbrony to the big stone! We had friends and family join us for our dander, and lots of stories, laughs, tears and encouragement were shared along the way. We raised £518.
I will continue to raise awareness about group B Strep, and the devasting effect it can have. We were so lucky. Many families are not, and my heart breaks for them. So please, if you are pregnant or thinking about it, when the time comes, shout about it, demand the test, order it yourself…I would have had I’d known this awful infection existed, which I didn’t. I had no information.
I will continue to share our story, so others know about it and that it is severe, life-threatening, and it does happen.”