Bella’s story 

It’s been one year since our Bella arrived and changed our lives. Beautiful Bella. Tiny, sweet, angelic, Bella. The light in our room. The sun in our sky. The fight she has inside was evident even then. A very difficult birth. Time in intensive care. Yet she took it all in her stride. Shes been strong from the start.

When you have a baby, the world becomes a different place. Because of them, you see things differently, feel differently. Care like never before. Love more fiercely. Any parent will tell you that. It’s a love like no other. 

Last month when we received a diagnosis for our sweet Bella, our whole world stopped. 

A diagnosis of Angelman Syndrome - a rare genetic disorder caused by missing information within chromosome 15. Most individuals with AS are nonverbal, experience developmental delays, learning difficulties, seizures and challenges with mobility and balance. Our hearts broke into a thousand pieces. 

When you are given a diagnosis for your child, you grieve. A foreign concept until now, grieving for a child that’s still alive - grieving for the life you thought they would have. Wishing things could be different for them. Wishing that you could be given any problem, any disease, anything instead, so you can take it all away. You cry thinking about their challenges, working so hard at the every day tasks like sitting, eating, walking and talking we all take for granted. Why Bella? Why any child? 

I don’t think the sadness will ever leave us but for me it is now moving into the background. Bella gives us the strength every day to not be sad for her.  Instead her big smile and her beautiful soul reminds us to be full of hope and determination. These qualities she so clearly holds, visible even at her amazing 11 months. That sadness now overtaken by the awe we have for her and the pride in everything she achieves each day. This girl is a fighter. She is strong. She is absolutely brave and no matter what challenges lie ahead in her path, there is no doubt she will overcome them all with us holding her hand, cheering her on and fighting her corner, every tiny step of the way...And there Bella will be, smiling through it all. Smiling like the most beautiful angel she is. Teaching us to always be happy and grateful even when things are dark and scary. Teaching us to try and try again. 

I think a part of acceptance of being utterly devastated by any diagnosis for your precious little baby is always going to be hard to get to. Some days impossible. But it is very much a process. It may be long. It may be even longer. With any news like this it really is one day at a time. 

For me, the denial is no longer lingering. We have hope, lots of it. There was a time a couple of weeks ago where there were no words. Even sharing this and talking to our nearest and dearest was inconceivable. Couldn’t believe the words that were trying to come out or the thoughts going around in your head. But life goes on and time is a healer. Bella is our healer. 

When I feel worried for her or sad, all you need to do is simply look at her and remind yourself that despite what the doctors are saying, she will stand up to this - she’s already facing it head on. Her progress is strong. Slow and steady, but strong. And she is so so happy. That really is all we can ask. And for your baby, happiness and determination are the biggest gifts when you are faced with this. 

God has sent Bella to us and I believe from within my soul that this is the biggest honour I could ask for. We have an Earth angel sent from heaven and I am so so glad she has been given to us to protect, advocate for and stand proudly by her side every day. She is a blessing and a true light in our lives, teaching me and her Daddy incredible lessons every day. God has gifted us the most precious and amazing task and I have promised to Bella that we will give her an amazing life. We will move mountains for her and our family and friends are already doing the same. 

Sharing our story is, I think, very important to raise awareness for Angelman Syndrome but also any condition that affects our beautiful little children. The support we have received from Angelman UK on their Facebook page has been amazing. It can feel isolating and very scary receiving news like this not knowing where to turn or what to do. But there are always others out there who know how you feel and can be a shoulder to cry on because they have been through it. 

This message, I hope, will give even just one person comfort if they are going through the same or a similar position. Showing that there is always hope and faith, no matter what those difficult times may be. 

Please pray for all the other earth angels who push everyday. Pray that they have continual strength and fight to keep pushing and not let anything stand in their way. And pray for their families too. 

I ask all those mummies and daddies who read this to take some time today to have another chat to their babies about friends or those other kids in the park or the school yard who may look different, sound different, be different for any reason. It’s our job to make sure our children today understand for the future how every one is individual in their own way, and make sure we have inclusivity for tomorrow. 

Please spread the message.

x

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