Alfie's Marathon March
Team fundraiser • 2 members • 2 charities
Raising money for Sebastian's Action Trust and Naomi House Children’s Hospice (Wessex Children's Hospice Trust)
On the 30th September 2023 a small team of family and friends will push and pull Alfie on his chair cross country over some really tough terrain for a 26 mile marathon. This will be from Sebastian's Action Trust Charity in Basingstoke to Naomi House in Stockbridge and then back again, so please dig deep and help us support these amazing charities.
Alfie is a lovely 10-year-old boy with severe disabilities from birth. Main ones are quadriplegic cerebral palsy, bulbar palsy, epilepsy, unexplained SVT's and bradycardia's, profound learning difficulties, completely tube fed and recurrent chest infections (requiring lots of input on a daily basis to keep Alf well including using a nebuliser, oxygen, suctioning, repositioning and chest physio).
Alfie is completely reliant on 24-hour care and hoisting due to these complexities, which makes it really difficult to go on holiday or have a break with Alfie to cater to all his complex needs. Places such as Naomi House and Sebastian Trust have helped provide this well needed break and change of four walls for us as a complete family with full accessibility. We are forever grateful for these times and opportunities of making memories. This is why we have chosen to do this marathon walk with Alfie, to raise money and awareness of these two amazing charities.
Naomi House is a respite place where a skilled support worker/nurse helps look after your child. You can stay or leave your child there. We have always stayed and accessed it with Alfie and his two siblings, as they see it as a holiday. This is great because even on stays where Alfie has had difficulty and struggled, Rob and I have been able to stay with him and help support the nursing team, whilst the two smaller boys get to still play and have a lovely time with the play team. This is really important to us as both younger boys have to change quite a lot of plans at short notice due to Alfie's unpredictable health needs, and I feel forever guilty and torn for them missing out.
Sebastian Trust has provided us with many fantastic family days out, which otherwise would be hard to access and participate in. It is essential and pressing to make forever memories, especially when your child is not meant to make it to adulthood. We have always been told that Alfie will not make it a day, then till he's 4 years old then past 18, so we try and see every day as a bonus and want to do lovely things with him. Sebastian Trust has also let us stay in their accessible accommodation as well. Again, this has been really appreciated and has really helped us. One time in particular was just after covid, and we were very scared to go anywhere due to shielding for Alfie but felt guilty of wasting Alfie's' limited time and the boys not doing what their peers was doing. This allowed us to feel safe and get away. We were able to bring a carer too, to help cover Alfie's nights, so we could enjoy real family time in the day time.
Both charities have helped us as a family, sign posted us to places/ things we never even knew existed and helped us connect with other's in similar positions which is invaluable. Having a severely complex child can be really exhausting, tough and isolating at times, so having these safe places to vent, feel supported and feel heard is vital. As this helps make a happier and stronger parent ready to take on the next battle. Ensuring Alfie's needs are met to make him the best version of himself ❤️💙
So please can you look at the sites which can be found by clicking one of the Andy Darbyshire names to try and keep them equal can you kindly donate with the one with the least amount on it.
Or donating on both sites would be even more amazing.
Thank you so much from Alfie and The Marathon Team