Archie and Charlie's Story
Brothers Archie and Charlie from Cheadle were both born with rare genetic condition Cleidocranial Dysplasia. It affects only 1 in a million people in the UK. The boys have been patients at Royal Manchester Children’s Hospital since birth. Their mum Lauren shares their story…
Although my boys were born with the same condition it affects them both completely differently; resulting in many visits and stays at hospital. It’s safe to say Royal Manchester Children’s Hospital has become a huge part of their lives.
My oldest, Archie, is almost nine and from birth he has been under the care of the specialist genetic team, under a large team of consultants. Archie is what you could call, your ‘typical 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 almost six and has been affected in a completely different way. Whereas Archie predominately has problems with his legs, Charlie is a respiratory patient. He was born with no collarbones and has fewer ribs. Charlie’s case is extremely rare, so much so that the specialists 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, so I’ve had to give up work as juggling both of the boys’ appointments 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.
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’ve done a lot of fundraising for them, including holding a number of fundraising events like charity nights and selling merchandise. My husband has also done a skydive and friends have completed sports challenges in their honour.