I would like to tell you our story and hopefully raise awareness..
In 2018 our son Louis was diagnosed was a condition called Craniosynostosis, which one or more of the fibrous sutures in his skull prematurely fused by turning into bone, thereby changing the growth pattern of the skull. Because the skull could not expand perpendicular to the fused suture, it compensated by growing more in the direction parallel to the closed sutures.
In some cases, where the skull size does not provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure.
We we’re fortunate that Louis did not suffer from raised pressure, however in children that do suffer it can cause issues with speech and language and development delays.
So, in May 2019, The Craniofacial Team at Great Ormond Street Hospital led by Mr Jeelani and Professor Dunnaway performed a full 360 reconstruction of Louis skull.
The operation went well and louis will continue to be monitored for raised pressure throughout his childhood years.
The period of time between diagnosis and recovery from the operation was really difficult for our family. However we were well supported by those closest to us and the fantastic team at GOSH.
So this has inspired me to do two things:-
1) Fundraise for Great Ormond Street Hospital and in particular the Craniofacial Team
2) Raise awareness about Craniosynostosis as it affects 1 in 2000 births.
So I have decided to do a huge physical challenge by cycling 300 miles from London to Paris in 4 days in the sweltering heat in July 2020 to raise money for Great Ormond Street Hospital.
Follow Joe’s Challenge here:
Donate to the fundraising here:
I would like to say we are very grateful to Addenbrookes Hospital as one of the consultants spotted something when he was in for routine appointment.
If you would like to contact me on 07935 396861 and we would happy to discuss this in more details.
Press release from Joe’s London to Paris 2020 Cycle ride for Great Ormond Street Hospital