Anya Madeline, 5, was a much longed for first child. Her family never imagined what was going to happen and how far away from the life they had imagined as a family their journey would be. Things started to change at 5 days old, from unusual twitching with no clear neurological cause to her having a seizure, and lots of other neurological symptoms, and a rapid trip to A&E. Kindred mum, Katherine said ” It was terrifying. As parents it’s your worst fear to see your new born in resus in A&E and not knowing what is happening to your child. It then looked like it wasn’t an epileptic seizure but something else….” At 6 months old we got the diagnosis: ‘Alternating Hemiplegia of Childhood (AHC)’, which is a 1 in a million rare genetic) neurological condition”.
There is no effective treatment. It causes physical and cognitive disabilities; and it is life-threatening. Many do not live to, or far into, adulthood. It is a rare complex epilepsy disorder which can present with any neurological symptom. Some people describe it as many different diseases in one as you can get symptoms from lots of different neurological diseases all in this condition. This condition is really one in a million, Anya is the only child in Edinburgh with it and the only child with the genetic mutation for this condition in Scotland.
Since becoming involved with Kindreds Hospital and wider teams the Behl family have had support with,
- Advocacy with professionals
- Benefit advice/financial advice
- Grant making for adaptation
- Emotional support/social
The Early Positive Approaches to Support (E-PAtS)
EPAtS is a group for family caregivers of young children (5 years and under) with intellectual and developmental disabilities. The aim to enhance parental psychosocial wellbeing and service access and support positive development for children.
It can feel like an isolating time for parents so offering a safe space to hear about other parent’s experience, learn from one another and connecting with peers can reduce that isolation. Abhishek, Anya’s dad was so impressed with the course, he later became a peer parent leading EPAtS Abhishek said “Living with a child that has such complex medical needs, means life can break you physically and mentally. Ways to approach each situation of not knowing how to handle your child’s behaviour, their communication and development can sometimes be impossible and very challenging for parents. I am so grateful to my daughters CAMHS physiologist and Kindred to add me to the E1PAtS course. So many ways we learn how we can overcome barriers & to improve our understanding of our child’s needs and condition and connect with other families. It’s been a great help to us as a family and to use what we have learnt in the course in our everyday life is amazing.”