A Parent Carer journey from lovely Emma: 

I am a parent carer for my 7 year old son who has Pallister-Killian Syndrome and would like to share what life is like for us as a family. 

His birth was rather traumatic and he was taken to NICU immediately, where later that night he was transferred (alone) to The Bristol Children's Hospital for emergency surgery to repair a Congenital Diaphragmatic Hernia. We had 'that' awful bedside chat with the consultant who gave us some very scary odds on survival, thankfully though he defied those odds. 

It became quite clear very early on that his development was significantly delayed and after lots of medical appointments and research, genetic testing confirmed PKS. I remember vividly the instant fear of our future, and what would this mean for us? What would it mean for him? I felt a huge sense of grief for the child I hadn't had, and was overwhelmed by fear. It has also put immense pressure on friendships, a number of us had all had babies at the same time, and their life felt so far away from mine. 

Finding my tribe has really helped my mental health, having a group of friends that all have disabled children has not only brought huge comfort to me but has also enhanced my previous friendships by relieving the pressure on them. Daily life is busy and demanding, he is remarkable and is developing at a rate far exceeding anyone's expectations, which is cause for celebration on a regular basis, but the struggles can sometimes feel unbearable.

I am a strong advocate for my son and although sometimes feel guilty for the help we receive, know how valuable it is. Being a parent carer has opened a world of possibility, I get to celebrate the small steps that most take for granted. I have made some lifelong friends and am stronger than I ever knew possible. My son is amazing and reminds us all how we should never take anything for granted. 💖Sunshine so often comes after rain💖 

Written June 2022