What better time to share this Beautiful You Session with Mabel than in May, Prader-Willi Syndrome Awareness month.
This beautiful little miss has been in front of my camera a few times, but this session was extra special. We have celebrated lots of milestones in front of the camera that doctors doubted would happen so soon. She is walking, talking and developing all of the attitude a toddler should have!
Prader-Willi Syndrome (PWS) is most commonly known to cause excessive hunger, resulting in obesity from a young age. It is this symptom that shows up in much of information you find regarding PWS, and what Mabel’s parents were confronted with in images when researching online. Other symptoms include short stature, intellectual disability, obsessive and compulsive traits and scoliosis. Luckily for Mable, her parents have an amazing team of specialists and networks of support to call on and guide them through this journey, which is resulting in some pretty incredible results.
This post on Libby (Mabel’s Mum)’s Instagram recently summed it up perfectly…
“Two years ago I was cuddling Mabel after being told our sweet little baby had a debilitating syndrome that will affect every part of her life. A neonatologist came by who had obviously just heard the news and came to say she was sorry, sorry as this syndrome is hard and then it gets harder and then when they are teenagers they are impossible to manage. She then went on to say it is such a shame as she is so pretty! I didn’t know how to respond to that last comment like it would have been OK if she were ugly?
“I was alone, four hours away from home and had hardly slept the night before as I was just so sad. I couldn’t help myself from reading and watching on the internet and had read that PWS is one of the hardest syndromes on families and siblings have a high rate of PTSD. I had called Justin (husband) in the middle of the night hysterical with the thought of having to put Mabel in a group home. I made the decision we would send our other kids to boarding school to spare them having to live with Mabel with all of her issues.
“Two years ago I had zero hope for our future with Mabel… fast forward to today. I am no longer worried about Mabel going in to a group home, I am no longer wanting to send my kids to boarding school, I no longer think my children are going to have PTSD from having to live with Mabel and there is definitely no shame in Mabel. The only thing that stupid doctor was right about was that Mabel is pretty, so pretty in looks, so beautiful in nature, so smart and so loveable. She is so much more than PWS and I wish that doctor could see us now, only that I never want to see her again! When I look at Mabel now I dont see PWS. I just see the sweetest two year old you will ever meet.”
The Beautiful You Project offers free photography sessions and digital files for children with special needs. If you are interested in a session for your child or would like to nominate a friend, please email firstname.lastname@example.org