Walking a Marathon for Ollie

As many of you will know, Julie and Andy’s grandson and Nick’s nephew, Ollie, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 when he was 3 months old.

SMA is a rare genetic neuromuscular condition causing complex disability as it affects the muscles used for breathing and swallowing as well as basic movement. Until recently the life expectancy for a child diagnosed with Type 1 SMA was just 2 years, but thanks to new treatments, including gene therapy, there is much more hope for children with SMA.

It’s been a rollercoaster year for Ollie and his parents with many hospital stays, lots of new care needs and treatments, but despite it all Ollie has smiled and achieved so much. Ollie’s Nana (Julie), Grandad (Andy) and Uncle Nick wanted to celebrate Ollie’s achievements with a fundraising event. So, in early April (date TBC) they will be walking from Dover to Dungeness (26.2 miles) in a day to raise money for two charities that have been very important to Ollie. Nick is raising money for SMA UK and Julie & Andy are raising money for Demelza.

SMA UK

SMA UK who provide support services to the SMA community while working to improve access to the best care, services and drug treatments today and funding research projects that can change tomorrow. For more info: Spinal Muscular Atrophy UK - SMA Charity

[ Click Nick Creeden below to donate to SMA UK]

Demelza Hospice Care for Children

Demelza Hospice Care for Children, which provides care and support for children with serious or terminal illnesses. Ollie has been enjoying weekly visits to their hydropool as well as checking out the sensory room and having a short residential break there. These services have been invaluable to Ollie and his parents as well as many others and the staff have been amazing. For more info: Demelza Hospice Care for Children supporting over 750 families

[ Click Julie Creeden below to donate to Demelza Hospice ]

Our Route

https://goo.gl/maps/ixS7ybQRFU3U2JPb9