Please tell us a bit about yourself, your daughter and your experiences of TSC?
Esme is 14 and loves horse-riding, colouring, music and cooking (cakes mostly). She enjoys watching DVDs and at the moment is watching The Greatest Showman and Mamma Mia a lot. She was diagnosed with TSC at 4 months after having seizures. In terms of TSC she has facial angiofibromas, small kidney AMLs, learning difficulties, epilepsy, a SEGA and autism. She goes to a special school which she loves and particularly likes going to Card Craft club, lunchtime youth club and community sports where she does trampolining and Zumba. This year she went on the school residential for 5 days to the Lake District and loved all of the activities. TSC has been part of our lives for 14 years now and is just part of Esme. She has achieved a lot and we know will continue to learn and develop. Living with some of the challenges TSC presents has at times been challenging for all of us - we are learning more all the time. We have supportive professionals around us and are on very familiar terms with the epilepsy nurse who is fantastic and the staff of the local Boots as we try to find the right medication for Esme’s seizures. The rest of the family is me, Steve (Esme’s dad) and Jacob (her older brother). I work for the local authority in their Information, Advice & Support Service where I support families with a child or young person with special educational needs and help them understand the SEN system and get what they feel is best for their child.
How have you been involved with the TSA over the years?
We contacted the TSA soon after our daughter was diagnosed and have used the our Regional Advisors on and off over the years. We have attended a couple of the TSA Conferences/Big Days when circumstances have allowed. We have taken part in research projects and are part of TS 2000. I took part in a telephone interview and our family was a case study in an annual report where we spoke about our experience of working with TS researchers. As a mature student on a Speech Therapy degree course I did a small research project on how families with a child with TSC access Speech & Language Therapy and the results were published in Scan. I have recently been speaking with Clare Kassa, the TSA's Head of Information and Support, about sharing my current work experiences at either the Big Day or through SCAN around accessing support relating to Special Educational Needs. We regularly keep up to date with what is going on in the world of TS through the TSA website. My husband and I fundraised for the TSA by running the Chester Half Marathon a couple of years ago and have got places to take part in the Great North Run for the TSA this year.
What made you apply for the conference bursary?
The opportunity to attend a conference somewhere that otherwise would not be possible.
What are you hoping to get out of the conference?
I hope to gain knowledge and information about the latest research into treatment options for those affected by TSC. I also hope to make connections and become better informed about available resources. Attendance at the conference would give me a greater depth of understanding of treatment options and how research is moving forward. This will allow me to better help my daughter get the best from the professionals who support her. I also hope to bring home the latest information and be able to share it through the TSA with others in the TSC community. I would love to be able to share with others at the conference the work that the TSA does and the support it gives to families. On my return I hope to be able to give a first hand account of the conference talks and will welcome every opportunity to pass on information that I gain. I work as an information, advice and support officer supporting families with a child with SEN and in my daily work am used to taking complex information and presenting it to people in a more easily understood format. I have a degree in a science subject and am confident at understanding scientific terminology and research presentations. I am friendly and outgoing and am looking forward to making the most of this opportunity to meet and get to know other families affected by TS from across the world.
What sessions and events during the conference do you hope to attend?
I envisage splitting my time across the different conference streams as far as possible. Because of my daughter’s age and the number of ways TS affects her I am interested in talks covering childhood, transition and adulthood as well as some of the more specialist talks e.g. mental health issues.
What excites you most about the conference? Everything! The content, the chance to meet new people, and, the fact that it is in Dallas which is somewhere I have never been.