Elspeth Woods

Anyone who meets our beautiful middle son Douglas falls for his sunny personality, loving nature and gorgeous cheeky grin. What isn't obvious is what he has gone through in his five years of life. Four general anaesthetics and surgeries, more medical appointments than I have had in my (considerably longer) life, countless blood tests and injections and hours and hours of therapy.

Douglas has a working diagnosis of Koolen de Vries Syndrome, hypotonia and Global Developmental Delay. Skills that other children acquire easily, or automatically, take a great deal of work for him to master. When Douglas' peers were learning to crawl, Douglas was working on physiotherapy exercises to gain control of his neck. When they were learning to hold a spoon, he was improving his oral-motor muscles so that he could swallow pureed food. When his peers were learning to walk, he was doing physiotherapy to strengthen his muscles so that he could sit up. When his peers were saying their first words, Douglas was doing therapy for the visually impaired so that he could follow objects with his eyes. Douglas works tirelessly for every skill he masters and with a huge smile on his face. We celebrate every tiny milestone and appreciate it all the more for the hours of therapy, exercises and determination that he has persevered with to reach it.

The team behind Douglas and all of his achievements is too large to mention everyone by name and, whilst the individuals have altered with his changing needs and move of continent, they have all contributed to his progress and abilities today. Paediatricians, geneticists, neurologists, cardiologists, nurses, physiotherapists, occupational therapists, speech and language therapists, play therapists, orthoptists, ophthalmologists, educational psychologists teaching assistants, aides and teachers. We will be forever grateful for the work, effort and love that they have devoted to him. He is a very lucky boy and would not be where he is today without them.

When Douglas was first diagnosed we swore that we would explore every avenue to help him to achieve his full potential, whatever that may be. And so it was that we found ourselves at the wonderful Brainwave Centre on Douglas' first birthday. Brainwave is an amazing charity, which works with children with disabilities and additional needs. It works on the principle of neuroplasticity to help the brain form new neurological pathways to acquire new skills.

The first visit to Brainwave was a very emotional one. We were in the early days of Douglas' diagnosis and did not know what life he would lead. From the moment we walked into the centre we were surrounded by positivity and support. Two therapists spent an entire day with Douglas during this and each subsequent visit, assessing his abilities and areas for development. The Brainwave approach is uniquely integrated, which is so important because he is an individual and not just physical or cognitive or communicational abilities, he is the sum of his parts. The therapists then formulate and demonstrate a daily programme of exercises for Douglas to do at home and at school to help him to reach the next level. We always look forward to Douglas' six-monthly sessions at Brainwave. They are a wonderful celebration of the milestones he has reached and it is exciting to see the bar set higher with each visit. The first time we arrived at Brainwave we were bewildered and still coming to terms with having a child with special needs. We left feeling upbeat and, above all, empowered with a programme of exercises to help him. These programmes are incredible and have been instrumental in Douglas' progress. They are innovative and I have watched other professionals take note of ideas and exercises that we work on with Douglas to use with their other patients.

Douglas is incredibly fortunate to have access to the amazing resource that is Brainwave. It is so important that they are able to continue their invaluable work with Douglas and I would love for other children to have access to their support. So I decided that I would like to do something to raise money for Brainwave. The last time that I did a sponsored event was probably a sponsored silence at school, but I didn't think that that would quite cut it! Douglas approaches every exercise with tenacity and determination. He plods away hour after hour until he masters a skill and I have learnt a lot from him. Those of you who know me well will know how much I loathe running. I am not good at it. It is certainly not something that comes naturally and not something that I have done much of. School friends might remember how I was always last in every running race at sports day and cross-country. So I decided that to fundraise I would take inspiration from Douglas and his approach to acquiring new skills and push myself out of my comfort zone. Way out of my comfort zone! On 10th September I will be running the Buenos Aires half marathon. Training is hard for me and the end result won't be fast or pretty, but that's the point. When I'm plodding away on 10th September, it will be an image of Douglas' face that will keep me pushing on and the knowledge that I am doing something to help him and other children like him. So if you are able to sponsor me for this event, I would be really grateful and your donation will go to straight to Brainwave (no site administration fees) so that this amazing charity can continue its great work.

Many times I have wished that I could go back to that doctor's consultation room when my husband and I were given news of Douglas' diagnosis. He was in the throes of an infantile form of epilepsy. We were told that he had a suspected genetic syndrome and that they didn't know whether he would ever walk, talk or smile. I wish that I could whisper in our ears "It's okay, he will do all of these things and more." I wish that I could have known then how this little boy would touch the lives of everyone he meets. That his capacity for empathy and making others laugh and smile was so great and that he (and we) would definitely be happy again.

Elspeth Woods