Our Parent and Professional Training day on Wednesday 30 April in Antrim Northern Ireland was a huge success with over 30 delegates attending the session, consisting of parents, physiotherapists, teachers, support assistants, transition workers, hospice workers and members of the Neuromuscular Team in Belfast.
Dr Janet Hoskin began the day by looking at the improved life expectancy for young people with Duchenne Muscular Dystrophy. In Denmark there are now more adults with Duchenne alive than children, and some people are living into their 30s and 40s. This is a very different picture from twenty years ago when young people with Duchenne were not expected to live longer than their teens. This brighter picture is due to interventions such as ventilation, cardiac management, steroids and spinal surgery.
So if the medical outlook is much better it is all the more important that we are preparing our young people for becoming independent adults. This means ensuring they have developed skills such as reading and have achieved the qualifications that they are capable of. We know that current research highlights risks such as reading problems and ADHD , and it is important that we are intervening early to address these problems if they are there.
Another area that was discussed in the training day was the importance of talking to your child about Duchenne highlighting the advice Dr David Schonfeld in the Action Duchenne publication 'How to talk with Children about Duchenne Muscular Dystrophy .' Many families are often advised to 'wait until the child asks questions'. However, if your child knows that every time Duchenne is discussed it causes his/her parents to be upset, he is not likely to bring the topic up voluntarily. Better to ensure your child has a label for his physical difficulties but at the same time is given hope that work is moving forward to find treatments.
Celine Barry spoke about the Takin' Charge project which she and Dr Janet Hoskin manage for Action Duchenne. She stressed the importance of listening to young people's aspirations and making sure these are central to planning for the future. She also stressed the importance of planning in order to get the best life possible.
Clare Harper McShane from Strabane, parent of Lewis who is 8 years old, attended the training day along with Margaret McBride her son's learning support assistant. Clare said:
'Whilst I was always determined for Lewis to have the best life possible , the training has made me realise I need to have a game plan , give him more independence and help him achieve what he wants from life. I am so grateful to the Decipha Programme and what it has done to help Lewis with his reading. Yesterday made me realise how important is to help set him up for his future.'