By Grace Wallace

My journey being a mum with a disability

I was born with a rare skin condition called Epidermolytic Hyperkeratosis. This condition causes my skin to grow every 1-2 days due to excess keratinisation. My skin is prone to severe blistering and skin infections daily, and my mobility is highly restricted. I bathe for over an hour every morning and night in bleach to help soften the skin so I can mobilise, manage my pain and reduce skin infections.

I met Ray, my husband, nine years ago when I was only 20 on a night out in town (at the Outback, of course!). Growing up, I never thought I would find anyone who would understand and accept my condition and all the complications it can bring. So, I am forever grateful that he has never once seen it as a barrier. 

After a year of dating, the conversation naturally came about having children. I never thought I would physically be able to carry a child and knew that there was a 50/50 chance to pass down my condition. My doctors and I started reaching out in New Zealand and overseas to see if we could find anyone with my skin condition who had children. Unfortunately, we couldn't find anyone. I knew in my heart that I couldn't risk passing on my condition as I struggle to manage my own pain daily. I started googling different options and came across IVF with PGD genetic testing. We met with a genetic counsellor, who organised tests that were sent overseas to find my exact gene mutation. Once this was confirmed and multi health checks, we were put on the waitlist to start IVF. 

We had 21 eggs collected, and 7 made it to day 5 to be sent away for genetic testing. Five came back with my skin condition, and two came back normal. Our first transfer, to our surprise, was a success, and we were pregnant with Bowie! 

I heard a few comments from people on essentially "playing God" and selecting my children based on them not having my skin condition. They would say, 'you deal with your skin, so why can't your child'. But they don't see me behind closed doors and the long, extremely painful nights, so they will never understand.

In 2020 we felt ready to try again using our second embryo, and I started weaning myself off my daily medication in preparation. We started blood tests for IVF. After three cycles of not producing enough hormones, I decided to try a medicated cycle to help aid a pregnancy. We then had our second embryo transferred, which unfortunately did not work.

We then decided to do a privately funded PGD IVF round. We had 9 eggs collected this round, only three fertilised and only 1 made it to day 5 to be sent away for genetic testing. I was devastated and thought it would indeed have my condition after 5 out of 7 having it last time. To our surprise, the news came back that our only embryo came back normal! We then transferred our embryo, which I am forever grateful stuck! Now we have our sweet baby Ari. 

I am now navigating life as a mum with a disability of two healthy boys. 

Photography by our family friend Shannon Radford - thank you for capturing these moments.

All image credits: (Grace Wallace, 2021)

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