As you all may or may not know our little princess has always had a pretty funny shaped head and on an inspection by my lovely nan she raised the concern that she didn't have a soft spot. Since then we had a few referrals but eventually found ourselves at GOSH craniofacial department.

At our first appointment here Dr Jeelani immediatly informed us that Tilly-may had a rare condition called sagital craniosynostosis-1 in every 2000 births. This is where the bones at the top of your head (where one of your soft spots should be) fuses to early and prevents the brain from being able to grow properly. He was very open and honest with us and didn't sugar coat anything. From here he said that she would would be referred for surgery which he would be performing.

Monday 25th November 2013 Tilly-may was admitted to GOSH for her 5 hour surgery where they remoulded her skull. Her op was very successful thanks to her amazing team of surgeons led by mr jeelani, the lead neurosurgeon at the hospital. She was in the hospital for 5 days and was such a brave little girl.

Since her operation she has recovered fantastically, we can't believe how well she has done! If it wasn't for the scar she has got (that you can already barely see as her surgeons where so wonderfully tidy and precise) then you would never know she had ever gone through such a traumatic experience.

To say thanks to the wonderful care and attention everyone involved with our precious little girl over her time in hospital gave, me and luke decided that we would very much like to raise some money for the craniofacial team at GOSH to help create new ways of improving the various different treatments that are available.

UPDATE 17/01/14 - Yesterday we had our 6week check up at GOSH and we saw Justine O'hara (the craniofacial fellow that worked closely with mr Jeelani during tilly-mays surgery. We saw her twice a day throughout our week in hospital). She was very pleased with how tilly-mays head shape has taken form and how well she has come on since her surgery. We also learnt that tilly-may was one of the hardest patients they've had and a big challenge for them in regards to how long and narrow her head was. We now don't need to go back for another check up for 6 months. 

We understand now that we won't see Justine again as before we go back she will have returned to Australia having now learnt the craniofacial surgery. We would like to say such a massive thank you for all you have done for us, you've been truly wonderful. We wish you all the best for your future when your return home. Australia will have gained a truely fantastic surgeon.

Which bring us to our trek. We are going to be climbing Mount Snowdon on Saturday 12th April (weather permitting if not the date shall be changed). We will be walking the Watkins Route. For those of you that do not know it is an 8mile round trip and will take us unfit lardys probably about 10 hours haha!! (yes i here you all laughing and thinking you fools but it is for a good cause after all!)

UPDATE 21/04/14: So...on friday 11th april myself, david lightley, courtney smith, micky donnelly, suzanne donnelly, chloe donnelly, michael donnelly, ryan ward, lauren donnelly, colin moore, keeley moore, ernie, ellie lightley, ashley roberts, sara donne & luke harrington (keeley aged 7, ellie aged 10 and michael aged 14) all made the long journey to wales from various places-Kent, Hampshire and West sussex.. Saturday morning we set off to leave the site to find our starting point for the Watkins route of Mount Snowdon about 8:15am. We arrived about an hour later. We started our trek at 9:50 am and ALL did incredibly well. A few of us powered ahead after we took a short break at our 2 mile point (half way up) with the rest of us taking a gentle stroll-with lots of climbing so perhaps not so gentle lol. About 3 quarters of the way up the weather changed almost instantly to heavy fog/mist and very strong winds but being the troopers we all are we powered through. At about 600yards from the summit myself, micky, suzanne, Lauren and courtney unfortunately took a wrong turn and came to a sheer drop at the edge of the mountain. We turned back and when we got to the fork that we had gone wrong a couple of very experienced moutaineers on there way back from the summit advised us that we should turn back due to how bad the weather had turned being that none of us are experienced with this kind of thing. We then talked about it for a few moments and were then met by david, ellie, michael and ryan who had also been advised to turn back even more so with young children. With this we finally managed to get a signal on the phones and rang the other half of the group as they were ahead of us. All but myself and micky turned back to escape the weather before it again got worse. We continued to find the others. About 400 yards from the summit we found chloe and sara huddled trying to warm up a bit and having a snack waiting for us. Once we reached them they informed us that they had spoken with ashley and he was about 50 yards away from the summit BUT that colin, ernie, luke and my 7 year old super trooper niece keeley were at the summit!!! With the weather being what it was we then had to make the decision to turn back or continue. For safetys sake we decided to turn back (at this point you could barely see the person next to you and we we're all drenched as though we'd had a fully clothed shower due to the mist). We informed ashley and colin (with the others) to turn back down the mountain. Luke called and said they we're going to take a different route down and meet us at the car due to it being much safer. We then found the others and ashley 

(still puzzled as to how he got down before us) apart from david, ellie, michael, ryan and courtney who had again soldiered forward,  just past our 2 mile pit stop mark. Once we reached the bottom all absolutly drained with sore feet after an incredible journey up Mount Snowdon we again had no signal and we're getting a bit concerned as to where colin, keeley, luke and ernie were. About 15 minutes past when a taxi arrived in the car park and out jumped our 4 summit makers. It turns out that the path they took down took them to the other side of the mountain where they then had to get a bus and a taxi back to the cars.

All in all it was an absolutely FANTASTIC day and everyone that came and took part did amazing especially the children who again may i remind you are 7, 10 and 14!!!!!!!!!

Our journey was also made easier by the very kind donations of energy drinks, sandwiches and snack by morrisons supermarket, so from all of us trekkers a very big thank you! As it stands at the moment we are now looking at Ben Nevis in Scotland for next year but i shall keep you all updated :D

******************WELL DONE EVERYONE :D********************

Thank you to everyone that participated in the trek and a very big thank you to those that have donated! (final donations are currently being collected for those of you that did so via a sponsorship form and will be added once all have been collected) :) All our love Michaela, Luke, Tyler, Tilly-may & all of Tillys lovely Trekkers xXx

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