Oscar is in GREAT form right now, full of life and laughter, the way we all love to see him. He paid Daddy's work a visit today, and had great fun meeting Daddy's friends. He told me all about "Big Al" not being there for him to meet! He came away with a pocket full of money and a Bob the Builder style attire, so was a very happy boy...
He still isn't eating much but we are running his tube feeds every night - it is impossible to keep him and Izzie from playing rough and tumble with each other, so we just can't manage to run these feeds during the day. This won't be the case when he is in isolation for 4 weeks in London - that will be a great opportunity to pack the calories in! Every cloud...!
Anyway - onto another important subject - we have had SO many offers from friends and family, and friends of family, to do some fundraising for Oscar. At the moment we are still waiting on confirmation that we can get the drugs Oscar needs further down the line in the UK, and if this doesn't materialise then we will need to start fundraising hard and fast for treatment abroad for him. As we still have some hope of that not becoming necessary, we are asking for present fundraising to be done for the charities we have listed on Oscar's blog, which are extremely important to us.
Here are a list of current activities, a massive massive thanks to all those involved in organising these efforts, as well as each and every person who has donated to them. It means a lot.
The first event is a black tie "Oscars Ball", being held this weekend to mark the end of term for some of Liverpool's finest students. Oscar's aunties' friends - Sara-Kate Wilson and Laura Wilson - have organised this knees up to raise funds for the urgently required MRI scanner in the Belfast Children's Hospital. And it was all inspired by our superstar, wee Oscar! Thanks so so much girls, good luck with it all, please send us some pics for the blog! And if anyone reading this can spare £5 for the most worthy of causes, we will be extremely grateful...
We have 3 teams running in the Belfast City Marathon:
Oscar's uncle Paddy McCartan and friends are running for the Northern Ireland Cancer Fund for Children (NICFC). What a great bunch of lads, stepping up and asking to do this for him. Quite a few of them met Oscar at Eugenia and Paddy's wedding in September, where Oscar was a superstar pageboy, and which is one of our last truly happy memories before we started living this nightmare. Thanks lads.
Oscar's uncle Dermot Monaghan and friends are also running for the NICFC, further details to follow. Good man Mermit.
Oscar's aunty Davina has a friend called Lynne, who told Davina that she would love to run in the marathon to raise some money for Oscar. Davina suggested NICFC, so Lynne and a group of friends have been training hard in order to run for this fantastic charity, who provide our family and many many other families here with crucial support. Thanks so much girls!
Please take a look at their fundraising pages, if you know any of them please give a small donation and leave a message of support. To see how many people care about Oscar so much, really makes me quite emotional and so unbelievably proud of our gorgeous and courageous little man! Unfortunately we won't be here to show our support for all Oscar's fundraisers at the Belfast City Marathon on Monday, around the time they will all be limping home, we will be jetting off to London to start our own tough "marathon" of treatment. Good luck guys, run well!
As a poignant little reminder to everyone about how fragile life and happiness both are, here is a picture of Oscar with Daddy and uncles Barry and Dermot after they ran the marathon last year. We were fundraising for Unique (www.rarechromo.org), the fantastic charity supporting families with rare chromosome disorders, who gave us unbelievable support when Oscar was diagnosed with Jacobsen Syndrome in 2009. We talked at that time about fundraising again this year for Unique, and never, ever dreamed in our wildest nightmares about this position we would find ourselves in 6 months later, and the change in focus for our fundraising this year... Life is precious, treasure every single moment of happiness you are blessed with...
|Belfast City Marathon 2011|