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I wasn't  sure whether to tell my story or not but maybe by telling you it'll  highlight why I'm  raising  money for Acorns hospice and what  a fantastic  charity it is.

I usually waffle a lot so I'm going to keep my story short( ish ) 

I had  a dream 2 years  ago that I  had  a baby boy named  Alexis. Hubby and I were happy with our 2 girls but the following year we decided to have another baby. My due date was 17th March and being  Greek Orthodox I was curious to see what name day this was and yes you guessed it, it was Alexis! 

Alexis was born 27th March this year. He was healthy and smiled at just 4 weeks. I noticed that  his arms and legs didn't  move much so being me I pushed  and pushed to be referred to the children's hospital. Alexis had blood tests which  surprised  and upset me as I thought he'd only need physio.

On the 10th July I got the devastating news that Alexis has a genetic condition called SMA (spinal muscular atrophy) type 1. Unfortunately  this is a terminal condition with a short life expectancy. There's  no cure  at the  moment but there are trials happening now in the  final stages. It's next year at the earliest before we will see any results.

Only the  following  week (20th July)Alexis was admitted to the children's hospital with a chest infection. I was by his side for 10 long days, my girls would come to visit and I'd take them out for lunch so hubby could be with Alexis but we never  spent much time together. Unfortunately Alexis  was too weak to feed by mouth and needed a ng tube so hubby and I had to train to do these   feeds and also train to give physio and use a suction machine to collect his secretions as he has a weak cough and swallow.

We had  a good  couple  of weeks with Alexis at home and managed to get out a bit as a family. 

But last week Alexis  was very unsettled and our fabulous consultant mentioned going to Acorns hospice where we could all go as a family and stay  in the family suite whilst Alexis was cared for by the nurses and docs until we got Alexis more comfortable to come home. I was hesitant to begin with but I didn't  want to go to hospital again so this seemed the best option and definitely the right decision.....

Acorns staff made us feel very welcome, we had our own little flat,which was like a little holiday  home. There  was a crafts room that the girls loved,each day there'd be an activity for our girls to join in.A sensory room for Alexis which he really enjoyed,and the best thing was a heated pool that we all loved and had to ourselves,Alexis could move his arms and legs more easily too. 

With thanks to the fabulous nurses and docs,Alexis was well enough to come home. (30th Aug )

We were  just so grateful that this charity was available to us and we'll be continuing to use this hospice so the least we can do is try and raise as much money as possible to keep it going.

Gabriella my eldest daughter and I will participate in the Acorns lantern walk on 3rd October, so please  sponsor us. Any donation is very much appreciated!

I'm taking it one day at a time and trying to enjoy our time with Alexis. (But today 2nd September he's got  a slight chest infection again and is unsettled so unfortunately it's a very stressful time)

I feel I need to update again as we're back again using Acorns hospice as Alexis took a turn for the worst on Friday 4th September and the nurse told me to prepare for the worst,our local Greek orthodox church held a vigil Friday evening whilst we prayed and stayed with Alexis. With all the prayers and postive thoughts, Alexis is a lot better today  (Saturday 5th) and we've spent quality family time here at Acorns, I had a swim and play with my girls,Alexis spent time in the sensory room and family visited to give kisses to Alexis. Without this amazing charity, I'd be stuck in a small ward at the hospital. 

We're overwhelmed  with the amount raised and all the lovely messages,thank you so much! 

Thanks for taking time to read my story and please spend just a couple more minutes to donate.

Many thanks 

Xanthe xx