Archie and Charlie's Story
Brothers Archie and Charlie from Cheadle were both born with a very rare genetic condition called Cleidocranial Dysplasia, which affects only 1 in a million people in the UK. The boys have been patients at Royal Manchester Children’s Hospital ever since they were born. Their mum Lauren shares their story:
Although my boys, Charlie and Archie were born with the same condition, Cleidocranial Dysplasia, it affects them both completely differently; resulting in many visits and stays at hospital. It’s safe to say that the Children’s Hospital has become a huge part of their lives.
My oldest, Archie, is 7-years-old and from birth he has been under the care of the specialist genetic team at Royal Manchester Children’s Hospital, under a large team of consultants. Archie is what you could call, your ‘typical cleido patient’. He has many of the characteristics you would expect of a cleido patient and is at the hospital for appointments on a weekly basis, whether that be for physiotherapy, hydrotherapy, genetics, scans or procedures. For many people, the thought of all those appointments and treatments could seem overwhelming, but for Archie it has now become his normality. He’s a trooper and I’m so proud of him.
My youngest, Charlie, is 4-years-old and has been affected in a completely different way. Whereas Archie predominately has problems with his legs, Charlie is a respiratory patient at the hospital. He was born with no collarbones and has less ribs. Charlie’s case is extremely rare, so much so that the specialists that treat him told us they have never seen a cleido patient like him.
That’s very fitting for Charlie though – he’s a cheeky chappy who is always keeping me on my toes!
As Charlie is such a special case, it has been much more difficult for us as a family. Hospital visits are more frequent than with Archie, meaning that I’ve had to give up work as juggling both of the boys appointments combined it would have made it impossible to continue.
My gorgeous little boy Charlie was just two when he had to be fitted with a port-a-cath, which is an access point in his chest to administer antibiotics, to enable him to have treatment. This is just part of his treatment as Charlie also has daily physio for his chest four nebulisers a day and an antibiotic IV every 7-12 weeks for two weeks.
What my boys have been through would be a lot for anyone to take on but Archie and Charlie have coped extremely well and are always very brave. Whether as an inpatient or out-patient when you’re born with a rare condition like the boys, hospital visits are inevitable and will always be a part of their lives.
As much as Charlie loves coming to the hospital as it’s such a child-friendly environment, he knows that not every visit is a pain-free visit. The reality is that he frequently has to have procedures that he is scared of and that can leave him feeling distressed. Luckily Royal Manchester Children’s Hospital has the most amazing staff who know my boys well and do everything they can to make the experience less daunting for them.
I’m so lucky to have Royal Manchester Children’s Hospital so nearby for my children. It’s an incredible hospital, with incredible staff. I want my boys to be seen by the very best consultants and they are. I can’t thank them enough for everything that they do which is why, as a family, we are dedicated to supporting the hospital and charity in any way that we can. We will never be able to repay the hospital for everything they have done for us, but by fundraising and creating awareness I hope it shows our appreciation and how much the hospital means to us.