Here's my story:

In September 2006 my wife Debbie gave birth to our second son, Harry (we now have three, Jack, 5 & Thomas, 6 mths). Everything seemed to be fine until a local health visitor noticed that Harry no longer had a ‘soft spot’ (should have this until approx. 2 yrs); he was 5 months old at the time. The health visitor also pointed out that his head shape was not forming as it should.

Immediately we were referred to the Craniofacial unit at Alder Hey in . After just a few days we travelled to Alder Hey to speak to a team of experts. Almost instantly the surgeon stated it would be necessary to perform corrective surgery for a condition called scaphocephaly. Naturally we were devastated, not only at the fact that Harry had to go through this but primarily because we had not picked this up ourselves earlier.

The surgery was performed about a month later (the anaesthetist would not allow it to go ahead any earlier as Harry had a chest infection) and after the worst week of our lives we were back at home (see before/after photos).

Harry’s scar (which runs from ear to ear across the top of his head) we’re told, is something he will have to live with for the rest of his life.

Most importantly though, the staff at Alder Hey were fantastic and further praise for the help they have given us (and still are) cannot be put into words.

Harry is a happy child; however, this is not the only problem he has faced.

 

About eight months later he ended up contracting gastroenteritis and even though we made 3 or 4 visits to our local GP he ended up on a drip for a few days at our local hospital. When the paramedic turned up he said that if we had stuck with our GP’s advice (keep him hydrated etc. and he’ll be OK – difficult when he is bringing everything back up) and not called an ambulance then our little boy would have been with us no longer.

Another eight months passed then one morning Harry woke only for us to notice that the left side of his face had dropped as if he had had some sort of stroke. A further visit to our local hospital diagnosed him with ‘Bells palsy’ (rare, we’re told, in someone so young). He was placed on steroids at once and after about a week he recovered. The experts at Alder Hey are still not sure if this is linked to his surgery and are unsure if it will come back.

As I mentioned earlier Harry is a cheerful child and even though, only two weeks ago he has recently had to have his first pair of glasses, this or anything else he has faced, has not knocked his confidence back in anyway.

I am inspired by his resilience and even though he has had a few ‘knock backs’ I still consider him to be one of the lucky ones as all this doesn’t seem to be affecting his quality of life.

On our regular visits to Alder Hey this is not always the case as the families we meet are often a lot less fortunate than we are.  With this in mind I feel compelled to give something back and what better way to do it than by raising some money via this website.

 

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