Alder Hey Children's Charity

George Johnson- Cranio Warrior 💜



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We will be supporting Alder Hey Children's Charity and taking part in their 2021 Olimpic games in honour of our baby boy George, we will be specifically raising money for the Craniofacial department who cared for George and will continue to provide care until he is 14 years old. Our challenge will take place on Saturday 24th July 2021, we plan to complete the Yorkshire 3 peaks in 12 hours. This is a charity so close to our hearts, George our youngest son was born August 2020 with craniosynostosis this is where the bones in the skull fuse too early closing the suture lines and fontanelles (soft spots). This can lead to complications such as deformity of the skull, increased pressure in the brain, developmental delays, vision problems and a range of other issues. The only treatment for this condition is surgery, there is early intervention and later intervention depending on age. Craniosynostosis is rare and occurs in 1 in every 350 babies born in the U.K. every year, George not only had one skull fusion but two. 

George was "lucky" enough to be diagnosed at 5 weeks and had surgery at 16 weeks on Friday 11th December 2020. This surgery is known as a strip craniectomy and barrel staving, so the skull is opened and the strip removed where the suture is closed then slits made around the back of the skull to keep it open in a "barrel effect" During surgery it was found that George had another suture closed (so he was originally diagnosed with Sagittal cranio- this is fusion of the back suture line) it was discovered George also had a coronal fusion this is the fusion of the suture at the front to the side of the skull. This is known as a multi fusion and is normally seen in connected syndromes and extremely rare in non syndromic cases like George. Following surgery we stayed in the high dependency unit with around the clock care, it was an extremely difficult time for us watching George suffer with severe swelling which is a side effect of this surgery. His eyes swelled completely shut and he couldn't see, at this point all we could do was read stories and hold his hand to provide comfort. George loved "Step into Christmas" by Elton John and was the only thing to comfort him when distressed so it was on repeat while in hospital. George required a blood transfusion which is common following this extensive surgery. George then required genetic testing (due to the multi fusion) which at present shows no common genetic cause however George's consultant feels that future research will likely show a connection. George has a "Warrior crown" scar from ear to ear over the top of the head which we are extremely proud of. George will be cared for by Alder Hey until 14 years old to monitor skull growth, Vision, Speech and a range of other areas. 4 in 10 children with Craniosynostosis require speech and language input, therefore he will undergo speech and language assessments at 18 months. George is currently 9 months old and doing so well, hitting his milestone so far and we are ready to face any speech delays which may occur! We will be there to support George with whatever he needs.

We are eternally grateful to Mr Parks (George's consultant) and Jane England, George's specialist nurse (and all of the Craniofacial department). We will never be able to repay them for the care we have received and future input we will receive. There are only 4 specialist centres in the U.K. for this condition and we want to make sure they continue the good work and support families in the same way we have been supported on our Cranio Journey. Please sponsor us to complete this challenge and make George smile when he sees how much he has touched the hearts of others! So please get behind Team George 💜

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Friday 23rd July - Sunday 5th September (or any alternative date that suits you) It has been an incredibly challenging time for everyone during the COVID pandemic and while we?re not quite out of lockdown yet, we are looking forward to a fantastic summer of activity. What better way to ...

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