Meet Freddie…

Cheeky chap, Freddie has been a familiar face at Dougie Mac for the last 5 years. And at 6 year’s old he is a happy, determined and larger-than-life character who doesn’t let anything stop him!

Within minutes of birth, Freddie was whisked away and taken straight to intensive care, only to be discharged 10 days later with doctors concluding that he was a perfectly healthy baby boy.

But on returning home, Mum Jo and Dad, Dan, knew something wasn’t quite right. Jo explains, “As soon as we got home we knew something was wrong. We quickly noticed his spine wasn’t growing properly, we were struggling to feed him properly and he had severe reflux.”

After a misdiagnosis doctors were at a loss as to what was causing these problems for Freddie, and as time went on the curves in his spine became worse, he was frequently vomiting and was beginning to suffer from muscle wastage. At 6 months old, a member of the home support team suggested Freddie should be referred to Dougie Mac’s children’s service; a thought that really worried Jo and Dan.  

“I thought, ‘we don’t need a hospice.’ I thought it was only for children who were going to die. But I was wrong – it’s so different to what I imagined it to be. Having a child with rare and complex needs is so isolating; it can really feel like you’re on your own, not knowing other families who are going through the same thing. Walking into the hospice, it’s full of other families like us! I suddenly felt like Freddie belonged to something and somewhere.”

Freddie was 2 years old before he received a diagnosis – Central Core Disease. This means that Freddie has dislocated hips, scoliosis to the spine, restrictive lung disease and muscular problems. As a consequence, he can move his legs, but can’t walk, and has very weak hips. He also has to be PEG fed. Spending a long time in a plaster cast, he wasn’t allowed to get dirty, or wet, or have all the fun that other children his age had. But coming to Dougie Mac changed that…

“When Freddie came out of the cast, he was afraid of water and sand and wouldn’t touch it. The amazing team at Dougie Mac enabled him to learn and enjoy so many new sensory activities through texture and touch, and really tailored it to what he needed. Freddie’s physical development has come on so much since we started coming – he’s become so much stronger and even took his first crawling steps thanks to the physios at the hospice!”

Coming to Dougie Mac really is special for all of the family, with Freddie bringing along his Nan and Grandad to the play groups and family fun days! And for Jo, she finds support and friendship with lots of other parents…

“It’s lovely talking to other parents going through similar things and to share advice. It’s a community of people who understand what we’re going through and it’s such a comfort knowing that if he’s ill, there is somewhere we can call. Dougie Mac has really welcomed our whole family – I only wish we’d come sooner!”