Harry was diagnosed with XLA at Craigavon Area Hospital when he was two days old
I felt devastated at the time and it was something I struggled with for many weeks. I was worried about what the diagnosis meant for Harry and how his health would develop, now aware that he couldn’t produce antibodies of his own.
My Granny Porter (who sadly is no longer here) was a massive source of support to me
I spent a lot of time with her in the last six months of her life when Harry was born. Through our many chats, she would always encourage me and support me to feel that I could manage everything and that I had been chosen to be Harry’s mum.
Harry’s first treatment started when he was three months old and it was very overwhelming
Many treatments have been difficult and we have all ended up in tears. I was very fortunate because, before we started home therapy, just before lockdown this year, my dad always came with me to the Royal. This was a great support for me and Harry.
One of the most poignant memories I have was when Harry was only five months and they couldn’t get a vein in his arm for his bloods, so they had to try and locate one in his head
This shows you how tough it was at times for us.
The immunology staff and children’s nurses have been great with us
Harry has been so well looked after since he was born. He is adored by my family and spends a lot of time on the farm with his ‘Ganda’ Porter and with auntie Rachel and cousin David. We can’t get Harry home sometimes; he just wants to be there with them all the time! He also loves his weekends spent with auntie Kirsty and their little picnics.
I have great support from my mum and aunties, who are always only a phone call away
My aunties have a great part to play in Harry’s home therapy. Without them, home therapy wouldn’t have been an option for us.
Harry has also spent a lot of time with his Grandpa and Grandma Chambers
They have been very involved in Harry’s upbringing. Harry is a happy, clever and articulate little boy, and much of that is attributed to the love and care they have shown Harry. There is nothing his grandparents wouldn’t do for him.
Harry was looked after so well by Lesley Hamilton and her family in the first few years of his life
She always had him out on the farm with her and just looked after him, like he was one of her own. He wasn’t sick at all the whole time he was with Lesley. Harry has now moved on to Esther and Wendy Moorhead’s and he loves being up with them and has settled so well. I’m so lucky to have such great childminders.
I believe Harry‚ happiness and contentment with all those involved in his care and upbringing has been a big contributing factor to his general well-being
Harry is now at nursery school, and so far he is doing really well. I was so happy he got into our preferred nursery. They look after him well and he is really enjoying himself.
We are still in the infancy of this journey we have with Harry, but I wouldn’t change him for the world
We have come through a lot with him as a family and we continue to trust that our ‘wee man’ will remain strong in the uncertain days that lie ahead.
We are so lucky to have such a strong band of support from family and close friends, especially my bestie Jayne Simpson. When we hit bumps in the road there is always someone to help pick us up and build us up to keep going.
Thank you again to everyone who has supported me and my family in this fundraising journey. It has reinforced to us the people who care so much about us and ‘wee Harry’, so thank you.
Posted October 2020