UPDATE!!!

we cannot believe the support we have had over the last 3 days. Thank you again to everyone who has donated!!! Ppod being ordered as soon as we can get the funds out :)))))

Update:

Thank you all so much for your amazing support, it has truly blown us all away

As many people know, this is a family that don't like to ask for help and it has taken them a long while to figure out the route to go down and after going through all avenues this is our last option. Here’s a little backstory on this beautiful baby boy and his wonderful parents…

At 22 weeks pregnant, they found out that Alfie had Agenisis of the Corpus Callosum. This in itself was a big shock. At 28 weeks pregnant, they then further found that little Alfie also had lissencephaly - a rare condition that means he has a completely smooth brain with no ridges at all which could majorly affect his quality of life, but they had no idea how severe it would be and kept hopes high that it wouldn’t affect him and he could live a mostly typical life.

Unfortunately, at 3 months old, it was clear that Alfie was deylayed in milestones and development and he was referred to paediatrics, physio and occupational therapy by the health visitors. He has spent the last 18 months working his hardest to finally be able to roll over!! This was a massive achievement for him and we are all so proud. The bubbly, smiley and wonderful personality he has shown us over the last 2 years made it clear he was the happiest he's ever been with his new found trick… but this is where Alfie-Johns mobility has stopped at the moment while he carry's on with his sessions.

Due to his lack of stomach muscles and trunk control it makes seating him safely and comfortably really hard. Alfie-John currently has a seat that supports him to sit upright and a standing frame, but not somewhere for comfort… He has a standard beanbag but it doesn't support him in a way that's beneficial or supportive enough for him which could eventually lead to regression of his progress which we absolutely do not want to happen.

So….after getting a trial and a quote we are asking for some help to fund a p-pod system for him to make his home life more comfortable. Unfortunately, there are very limited charity's that support p pods as they are seen as a luxury for children with disabilities which isn't the case at all as it is more of a safety necessity for Alfie-John and many other little ones out there. The NHS do not currently support these either due to the expense and demand.

They have managed to save some money for it but we are coming to ask for help for the rest. They know this is a big ask and it took a lot of convincing however, they also know this is not about them, it is about sweet little Alfie-John. As someone close to this family, I know they will be so so grateful for any help which they have already said.

Thank you for reading, any help is help.

xxx