Member's statement: Batten Disease Awareness Day
Member's statement by Mr David Brooks on .
- MLA
- Mr David Brooks
- Party at the time
- Democratic Unionist Party
- Date
- 9 June 2025
- Type
- Member's statement
- Business
- Members' Statements
- Heading
- Batten Disease Awareness Day
- Assembly identifier
- Official Report component 4996994
Read the official Assembly record
Text
Today is Batten Disease Awareness Day. This is a day that carries great meaning for families around the world, and for around 100 to 150 families in the UK: a community that refuses to give up hope.
Batten disease is a rare inherited disorder of the nervous system that typically begins in childhood. It is progressive and, at this time, has no known cure. Children with Batten disease may experience seizures, vision loss, difficulties with movement and a decline in cognitive function. As the disease progresses, it steals the abilities that most of us take for granted. Batten disease does not just affect the child: it reshapes the lives of parents, siblings, caregivers and the networks and communities around them. It challenges them to find strength, courage and resilience in the face of unimaginable hardship. Some in the House will know one such set of parents: my friend and former colleague George Dorrian and his wife, Lauren. Their beautiful daughter Edie, who is four years old, has the condition. They have been inspirational in how they have faced and are facing that unimaginable circumstance for their daughter. George told me recently that, thankfully, Edie is too young to be aware of the seriousness of the condition. She is a happy child who, like any other, enjoys few things more than watching cartoons. The family's aim is to ensure that she enjoys every day and that they do not waste a single day spent as a family with her. Anyone who wants to see a great picture of Edie should see me afterwards, as Lauren once sent me a photo of their little girl dressed in a beautiful pink Linfield T-shirt, which made her Glentoran diehard father, George, almost crash the car when he was told about it. Today is about raising awareness, because awareness fuels research; awareness brings resources; and awareness helps families to feel seen, supported and less alone. More important, awareness drives action, from funding for scientific breakthroughs to better access to care and support. We celebrate the children and families who face Batten disease with unbelievable strength: your stories matter, and your voices are powerful and are being heard. It is also a day for us to let those families know that they are not alone. Those of us who know George, Lauren, Colin and Edie want them to know that we are here for them.
399 words. Text as published by the Northern Ireland Assembly.
Assessment
Jev’s structured answers met the documented threshold for “not flagged”.
- Overall probability that the activity is being used to promote, exploit or escalate an identity-based controversy: 0.03 (flagging needs at least 0.70; at or below 0.30 is not flagged).
- None of the five culture-war criteria was met (each was below 0.60).
- No identity-based framing was identified (1.00).
- Subject area: Disability (including neurodivergence and mental health), disabled people and disability or sickness benefits.
- The overall probability was at or below the not-flagging threshold.
This is an AI-generated assessment of the text, made against published criteria. It is not a finding of fact about the MLA or their intentions. The Assembly record itself is the fact.
Jev’s structured answers
| Question | Probability | Met? |
|---|---|---|
| Identity framing | 0.02 | No |
| Sectarian or communal antagonism | 0.01 | No |
| Cultural grievance politics | 0.02 | No |
| Dog-whistle messaging | 0.02 | No |
| Controversy escalation | 0.06 | No |
| Legitimate policy scrutiny | 0.15 | No |
| Overall judgement | 0.03 | At or below not-flagging threshold |
| Option | Probability |
|---|---|
| No identity-based framing (chosen) | 1.00 |
| Reports or questions it | 0.00 |
| Criticises or condemns it | 0.00 |
| Adopts it | 0.00 |
| Subject | Probability |
|---|---|
| Disability (including neurodivergence and mental health), disabled people and disability or sickness benefits | 0.92 |
| Sport (including the GAA), the arts and cultural bodies | 0.07 |
| Sectarianism, hate crime and community relations | 0.01 |
| No identity-related subject | 0.00 |
| Flags, emblems, symbols, names and memorials | 0.00 |
Assessed 21 October 2026 at 12:42 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.
Disagree with this assessment?
Classifications can be challenged. A person reads every challenge, and any change is recorded publicly above with its reason.