Habibah's Blog #1: Hi, I’m Habibah!

Habibah is a Lifelites tech user at Alexander Devine’s Children Hospice. You might remember her from the rainbow cake she baked with Great British Bake Off finalist, Josh Smalley. Regularly, she will be sharing her thoughts and daily life in blog posts for Lifelites.

My name is Habibah, I’m 17 years old and I live in Berkshire. I have a condition called congenital muscular dystrophy, merosin deficient. I was diagnosed at just nine months old, after my grandma noticed I wasn’t meeting my developmental milestones. I’m the eldest of three siblings and currently preparing to sit my GCSE exams — so life is a bit hectic right now!

Outside of school, I love expressing myself through creativity. I enjoy making jewellery, crocheting, and painting, and I spend a lot of my time baking — which is one of my favourite things to do at Alexander Devine Children’s Hospice.

The hospice is a huge part of my life. The support I get from the amazing staff there means so much to me, and it’s also where I get to enjoy baking thanks to a special piece of tech called a switch, which Lifelites provides.

It helps me be fully involved and in control of my bakes — something I never imagined could be possible.

One of the most exciting things I’ve done recently was baking alongside Dr. Josh Smalley, a finalist from The Great British Bake Off in 2023, to celebrate Lifelites’ 25th anniversary.

We made some amazing cupcakes together, and it was an experience I’ll never forget! You can even find pictures and video of our creations on the Lifelites website and Alexander Devine Hospice Instagram page.

My dream is to one day open my own café where I can sell my bakes and create a cosy, welcoming space for others. It’s a big dream, but one I’m really passionate about.

In this blog, I’ll be sharing more about my life — from school and family to arts, baking, and how I use Lifelites technology to support my independence.

Being a teenager isn’t always easy, but I believe in finding joy wherever I can, and I hope these blogs bring a bit of that joy to you too.

Thanks for reading — and see you again soon!

Habibah