Sebastian’s Action Trust like to regularly feature some of our families that we help to highlight not only the work that we do, but also raise awareness of some of the illnesses that our children and their families face every single day. The Whaleys from Eastleigh in Hampshire are one of the many families that have used The Bluebells as well as our Family Outreach Service and they are the focus of this weeks blog.
Ricky Whaley is now twenty one-years-old and he is unique in that he is the oldest, seriously-ill person that our Family Services Team support. Ricky suffers with a very rare and severe form of Epilepsy known as West Syndrome that is extremely difficult to treat. The syndrome starts very early in life and to raise the chance of successful treatment and keep down the risk of longer-lasting effects, it is very important that the condition is diagnosed as early as possible and that treatment begins straight away. However, there is no guarantee that therapy will work even in this case. He also suffers with Global Developmental Delay (GDD) that affects his essential physical development such as motor skills, speech and language, cognitive skills and basic social and emotional development. This has meant that Ricky is wheelchair bound and needs round-the-clock care.
Despite the obvious hardship that Ricky and his family face on a daily basis it was wonderful to listen to how positive and enthusiastic his mother Sonia was when we spoke to her about Ricky and the services that Sebastian’s Action Trust provides. “Everyone is caring and sensitive towards the families that stay at The Bluebells. Everything, no matter how small or seemingly insignificant, is catered for. The accommodation is state of the art and the hydrotherapy pool is magnificent. Ricky finds big crowds overwhelming so he loved his one-on-one music therapy session as well. He normally hates loud noises but he really responded to the Music Therapy which took us all by surprise. The setting, the grounds and the friendly atmosphere were just perfect” Ricky is also something of ladies man it seems. He likes nothing better than to be in the company of females (particularly blondes!) and is a very loving and tactile young man. “He loves people’s faces” Sonia explains. “And if he likes your face he is most content being able to touch it and enjoy that physical connection with others”. Beyond his penchant for the ladies Ricky loves swimming and enjoys just being out and about.
The Whaleys have enjoyed a holiday at the Bluebells in 2012 and have attended some of our fundraising events and family days such as our Christmas In July party. They have also received home visits from our Family Services Team and Sonia has also made use of the well-being therapy treatments. “It was so nice to have something so simple like a back and neck massage and a pedicure. Something I have not had for years and I had forgotten how great these treatments make you feel” she said. “The work Sebastian’s Action Trust do is so wonderful and we will always be grateful for everything they have done for us”.
Through our Family Services Outreach service we offer a range of emotional and practical support initiatives to help families of seriously-ill children cope with the stresses and challenges that invariably accompany their situation. This includes: - Sibling support- to help brothers and sisters have fun, share experiences and benefit from peer support - Activity days, workshops and drop-in sessions- opportunities to tap into a range of initiatives for children, parents, grandparents and carers. - Welfare advice, guidance and advocacy- to help families steer through the maze of organisations and procedures needed to find appropriate support for their situation - Help at home- a listening ear, with bespoke care and support to individual family members as well as the family unit - Well-being therapy- a range of therapies offered to parents and primary carers to help alleviate some of the stresses that come with caring for a life-limited or seriously-ill child - Psycho-social support – through our monthly Chill and Chat sessions and access to counsellors and psychologists, we aim to offer coping strategies, professional advice and a confidential space to discuss matters affecting individuals or families - Bereavement care- our commitment to our families continues after the loss of a child, for as long as the family wish.