Wolfie is 6 years old. At age 5 1/2, after a long journey of not knowing, and eventually participation in the 100,000 genomes project, we received a diagnosis of Angelman syndrome. He also has sensory processing disorder. Angelman syndrome (AS) is a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities. People with AS are usually non-verbal or have a few words, but are often highly sociable and have an intense need for social interaction. A fascination with water is also common with AS. Wolfie LOVES water and thrives in the outdoors!
We noticed his capacity to concentrate is much higher, and better sensory processing when playing outdoors in nature and with easy access to water. He attends a specialist school, but because of the uniqueness of his condition and the clear enhancement when outdoors, we knew a forest school setting one day a week would be important to his schooling and development in these early years. However, the need for a 1 to 1 support worker on top of the school fees made this inaccessible for us. This is where our relationship with the Petersons Fund started, when they agreed to sponsor a 1 to 1 support worker. I can honestly say this has been transformative for Wolfie and we have all seen clear improvements across his development, and his sensory processing. It has also helped him to grow his local community, as the forest school is closely connected with it, whereas the specialist school is far and he has to get transport.
Wolfie lives in an area where disability services are desperately underfunded and he has no access to any therapists outside of school (and their resources are very stretched!). He has some significant health issues and also chronic sleep disorder, and really needs more regular access to therapists, so we are now exploring what we can put in place privately to best support Wolfie's overall development, health and well-being. This would not be possible without the support of the Petersons Fund for children.
We feel so blessed to have been able to join this amazing family and it has changed our lives significantly - we feel so much more optimistic about now and the future, knowing he is being given the best chance to thrive and fulfil his potential. It is also a huge relief to be able to stop having to fight for every bit of support. I feel like I have been in "survival mode" for years and not been able to give Wolfle the time and attention he needs. Having access to this support means more quality time with Wolfie and more time to implement and embed the input of private sector, bespoke therapists to ensure life long benefits. Thank you!
- Written by Sky (Wolfies Mum)
