The Henderson Family

 Hi I'm Louise Henderson, I'm 42 and live in the coastal town of Banff in Aberdeenshire. I live with my husband Danny, our 13 year old 22qutie Alfie and his 9 year old sister Paige.

Almost 14 years ago our life was turned upside down never to be the same again. Our beautiful 5 day old little baby Alfie was rushed to hospital. He'd been taking seizures all day which we originally thought were hiccups. The seizures were found to be due to low calcium. After a 2 week stay in hospital with several tests done, at 5 weeks old we were given the news that our perfect little boy had 22q11.2 deletion syndrome. I was sent away with a website which would prove to be invaluable to us. That was Max Appeal. Without Max Appeal we wouldn't know what we know, I wouldn't have the vast amount of friends I have and we would feel very very alone. I want to thank Max Appeal for being there. That night might have altered our lives beyond what we ever thought but Alfie is one amazing, beautiful, funny, smart, brave little man and we wouldn't have him any other way!

In Sept 2017 I wrote to my newly elected MP David Duguid asking him to join the APPG for 22q. Someone from his office called me right back and invited me to a constituents surgery he was having that day in Banff. So we all went along and were not only delighted David was showing such an interest in 22q but that he was going to go to the APPG meeting in Westminster the following week. The result of that meeting was that he agreed to be the chair of the APPG. And the rest they say is history. David is working so hard to try and raise awareness of 22q and for this we are so grateful.

Alfie is now in his first year of secondary school. He is absolutely thriving and really loving school for the first time in a very long time. He has amazing support. At the moment things are going quite well with Alfies health. He has a hearing aid and is on CPAP at night for sleep aponea. But generally he's well. We don't know what the future holds but we will tackle it the way we've tackled the last 13.5 years, with strength and hope