Amy – Jo Adams
I don’t know how to begin to introduce this amazing inspirational lady and i am honestly honoured that she has agreed to do a guest post for blogmas !!
So today’s storytime is Amy – Jo sharing, i hope you enjoy it as much as i did!!
𝒜 𝒷𝒾𝓉 𝒶𝒷𝑜𝓊𝓉 𝓂𝑒
I’m Amy-Jo, 25 and live in the West Midlands, UK. I met Matt in 2011, and we married in July 2017 and have had our own home for nearly 5 years now. I qualified as a nurse when I was 22 and work part-time nursing and have my own aesthetics business that I’ve had for a year now.
I recently set up my blog in May – Refusing The Risk, to share my journey and process through the IVF-PGD (Invitro Fertilisation-Pre-implantation Genetic Diagnosis). My Mom had her diagnosis of Huntington’s when I was around 11 years old. My Mom inherited HD from her Mom, however, I never met my Nan as she had passed away before I was born. After my Mom and Dad told me about HD I began to research for myself. The internet and google was the best and worst thing for me, my Mom and Dad informed me as much as they felt I needed at the time, I was still a young girl approaching teenage years. I began to google the disease in more depth and quickly became aware of the risk I carried of being positive.
At the age of 17 I met Matt, by then I had become an expert in the Huntington’s Disease Youth Organisation (HDYO) website and had done endless reading about the possibility of being tested for the condition before having symptoms. I spoke for hours with him about HD and the fear I had around not knowing. I am a bit of a control freak – the fear of not knowing for me was resulting in disturbed sleep and lack of concentration daily – it was something I needed to know! So at 17 years old, I asked my GP to refer me. After around 3-4 months I had results day – which sadly told me I was positive of HD. A big influence for testing for me personally was around having children and I wanted to know the risks. For me, I knew I wanted to do everything I could in my power to eliminate this disease from our future family and for HD to end with me and I knew IVF was the way I wanted to go.
It’s been 7 years since the positive test I just lived as normal really. I kept in touch with the Huntington’s Disease Youth Organisation website and Facebook page regularly. Matt and I even participated in a video for their website on the impact of testing HD had on our relationship (you can find this here – Click the link
My Mom is in end stages of Huntington’s now, she receives care in a nursing home and has been there for nearly 2 years. It’s hard watching a disease slowly take away the person you love. I feel like I have already gone through an element of grief for Mom, slowly she becomes less like herself and more trapped in her own body and it’s hard not to see it as a reflection of what’s to come for me, it gives such a mirror-like feeling… your constantly thinking – will I be like this? Will people become frustrated with me? And I do still struggle with this at times, particularly on Mom’s bad days. Previously my Dad was my Mom’s main carer and I helped with personal care etc, however, sadly I lost my Dad in January 2018 as he was also in ill health (not HD related).
After being married for over a year we felt it was the right time to start our journey to becoming parents! We met with the Consultant and PGD lead at Birmingham Women’s Hospital in October 2018 and our journey began! We sadly had a failed IVF cycle in May/June of 2019, the 2 eggs that made the testing phase of the process both sadly carried HD. In November, we had another cycle of IVF but this time we have some positive news, we had 4 eggs that were tested for HD and we have 2 HD free eggs! So it will be in the New Year before I have implantation.
It’s been overwhelming for me how supportive everyone has been of our journey and how little people know about IVF in general, let alone the genetic testing aspect in addition to IVF. In my mind, I thought even if I can educate a few people and just raise some sort of awareness of HD and the options out there when having children then I am more than happy – but the response I’ve received has blown me away! I still think – who wants to read me blabbering on?! I’ve tried to keep my blog posts interesting – varying from explaining Huntington’s as a condition, to the science about IVF and PGD and I’ve tried to be as open and honest about the process because I think it’s important not to have unrealistic expectations and think that it would be easy.
I’m hoping to attend the HD congress in Glasgow in May next year and talk about my experience which will be amazing! The past 2 years have been really hard for me, losing my Dad, Mum being placed in nursing care and my IVF journey – but fingers crossed 2020 will bring us the baby we’ve been dreaming of!
Thank you Amy – Jo for sharing your story i appreciate you taking the time out of your busy life to share your amazing story with us!
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