Myself and Richard Green will be running the Southampton Marathon on 22nd April 2018.

Despite neither of us having time to train or any history of running long distances we still thought it would be a good idea!!!

As Ambassador for Shine South I have seen first hand what a difference they make to the families, we would love to help in some small way by raising funds.

Here is a personal account detailing the realities of the condition by one of our members.

My son was diagnosed with Spina Bifida Lipomyelomeingocele, tethered spinal cords, Syringomyelia and Thoracic syrinx from T7 - L1, after suffering excruciating constant pain.

Lipomyelomeningocele occurs when there is an error in the closure of the neural tube.

Normally, the spinal cord is able to move somewhat freely within the spinal canal. But in lipomyelomeningocele, the cord’s movement is restricted by fatty lipoma’s connection with the meninges and the area outside the spinal canal. This condition is called a tethered spinal cord, and it can have severe consequences.

Unfortunately, these conditions have impacted on his every day living, he currently uses a wheelchair. Due to his Spina Bifida he has a Neurogenic bowel and Bladder and he uses a catheter. He has surgery every 6-8 weeks and attends a school specializing in Autism.

Shine South has been a vital resource for our family, we have been able to socialize with other families experiencing the same difficulties, and my son has had the opportunity to meet with other children who understand his disabilities and now feels connected with others his age, where before he felt isolated. We have attended parties, summer picnics and multiple other events through Shine South, we have had a grant to help supply us with a specialised wheelchair and have had use of their holiday lodge, which is fully adapted for wheelchair uses, complete with wet room.

My son is always happy and never complains. He sets his own goals and he strives to meet them and he helps other kids come to terms with their disabilities. I’m so proud of my son, as he has been an inspiration, and Shine South has given him the opportunity to feel accepted and appreciated in a way that no one else can. A place where he can be himself and not feel different and not stand out. It is paramount that Shine South are given the resources to be able to carry out the work, support, friendship and empathy that they show to each and every single one of their members. Shine South is completely non-profit and rely solely on donations and fundraisers to get by. They all have a profound personal understanding of Spina Bifida/Hydrocephalus, and this deeply reflects in their passion to help others.