We are raising money to fund research into how to support siblings of children with disabilities and create resources to do so.
Life's journey can seem like a mountain for all of us. But for a family living with a disabled member, the journey can seem that bit more difficult, lonely and challenging.
Our sister, Katie, wrote a poem when she was 10 years old about this mountain journey, a few weeks before being diagnosed with a brain tumour that left her with significant disabilities. It would also leave us - her siblings and peers - with lifelong adjustments. We had to come to terms with the loss of how life could have been if Katie had not had cancer.
Many families are walking this difficult, often lifelong, mountain journey. The needs of both the affected child or young person and their parents tend to be recognised, with some support available. However, very few people think about the siblings’ journey in all of the turmoil and struggles.
We climbed a physical mountain, Kilimanjaro, in 2016 to raise awareness of the huge mountain of challenges many families are facing. We want to raise money to fund research and resources to support the emotional and spiritual needs of the siblings of children and young people living with complex care needs. We hope to learn how to support them better on their own mountain journey.
To raise the last of the money for developing resources to support siblings and to continue to raise awareness, some of us are running the Birmingham Half Marathon this October. We would be so grateful for your ongoing support.
We are working in partnership with the Birmingham Children’s Hospital’s NHSFT, Centre For Paediatric Spiritual Care to carry out this research and develop resources.
Thank you so much for your support.