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My story starts with a dream I had in 2014 that I had a baby boy named Alexis. Hubby and I were happy with our 2 girls and didn't plan to have any more children but the following year we decided to have another baby and my due date was 17th March 2015. Being Greek Orthodox I was curious to see what name day this was and yes you guessed it, it was Alexis! 

Alexis finally arrived 10 days later after a tough labour but worth all the pain! He smiled at just 4 weeks but I noticed he didn't move his arms and legs very much so I asked to be referred to the children's hospital. The consultant wanted to take blood tests as wasn't sure exactly what Alexis had (he was 11 weeks old ) which upset and surprised me.

On the 10th July we had 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. We had nothing in our family history to make us aware of this condition.  SMA causes the muscles throughout the body to become weak and shrink but it doesn't effect the  brain. There are drug trials happening at present but not complete till next year at the earliest. 

Only 10 days later Alexis was admitted to the children's hospital with a chest infection and deteriorated quite rapidly, he needed a ng tube to feed, physio and suction to collect his secretion which Alexis couldn't cough up. ( hubby and I were trained to do this). I was by his side for another 10 days in a small ward.

We spent only 2 weeks back at home adjusting to Alexis' needs when he became unsettled again, this time we went as a family to our local Acorns children's hospice for 5 days and the staff were amazing. 

Today  (Sunday 6th September 2015)we're back at Acorns as Alexis is getting weaker. With thanks to everyone's generosity we've raised a massive amount for this fantastic charity! 

It's now 17th September and we're back home with Alexis, he's managing ok but with lots of secretions that needs constant suction, it's difficult to go out now and unfortunately only tolerates lying on his side. Alexis is still full of smiles and we all absolutely adore him. Taking it day by day and trying to enjoy our time with Alexis best we can.

Unfortunately Alexis passed away on 2nd November 2015 after spending the last 5 weeks back at Acorns hospice. He smiled til the very end and we will always remember his sparkling brown eyes and contagious smile. RIP our angel Alexis,forever in our hearts. 

We need to find a cure for SMA and help fund for the research.

Nobody should have to go through what we have had to deal with. It breaks my heart watching my beautiful brown eyed smiling baby get weaker. 

Thank you for reading my story and please spend a couple more minutes to donate. 

Many thanks 

Xanthe x