Life with an angel

My son James was 11 months old when a call from the hospital changed our lives forever. I’ll never forget the moment the doctor told us that our little boy had Angelman Syndrome: it felt as if all the hopes and dreams we had for our son had been wiped out by a single phone call.
Angelman Syndrome is a rare genetic condition that is caused by irregularities in chromosome 15. It means my son faces many difficulties in life; he cannot walk or talk, is prone to seizures, and requires 24/7 care. It also means that he won’t experience many things that other children take for granted. I remember bawling my eyes out on the phone to my parents as I listed all the things he’ll miss out on. To think that he will never play make believe with his big brother, find a job, get married... it still breaks my heart.
James may never lead a so-called “normal” life, but he is a very happy little boy. In fact happiness is a characteristic of Angelman children, which was originally known as “Happy Puppet Syndrome.” On the days where my wife and I feel overwhelmed by it all, seeing his smile and hearing his infectious laugh helps us to carry on. We know our son will never achieve the same things as other children, but our goals and expectations for him have changed. Now, every little achievement means so much more.
Whilst there is a lot of laughter in our house, every day is a challenge. James is 5-years-old, and depends on us for absolutely everything. Even simple tasks like getting him dressed or brushing his teeth are two person jobs, as he doesn’t understand instructions. At the moment we can just pick him up or hold him down if he tries to fight us, but what will happen as he grows bigger and stronger? My wife is much better at just dealing with the present, reminding me that we need to take each day as it comes, but our child needs us in every way possible: so much so, it’s as if we are part of him. The pressure is immense, and I constantly worry about the future.
Angelman Syndrome is incredibly rare- only 1 in 25,000 babies are born with it, so even amongst doctors there is very little awareness of the condition. For our family, the Angelman charity ASSERT has been a lifeline. So much of the information that we needed came from this charity and the network of parents it supports. They help in so many different ways; from answering questions, to putting you in contact with medical experts, to arranging respite care. They connect families so they can share their experiences, be it online or through much needed away days. They also help to fund vital research into the condition. Scientists are using gene therapy in clinical trials in the hope they can ultimately cure Angelman Syndrome. This in turn would offer hope to so many people living with genetic syndromes and disabilities.
That’s the reason I’m writing to you. This year, I want to do as much as I can to raise awareness of Angelman Syndrome, and to support the charity that has done so much to help families like mine. I know that people often say this when they’re fundraising, but I have personally seen the difference that this charity makes. Any money we raise will go directly to ASSERT, and will help to improve the lives of children and their families who are living with this syndrome. Your support could help us finally find a cure.
I hope you will be a part of something that will change the lives of our angels.

Thank you.

Ross, an Angelman father

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