Acheeva bed for Aydin
Donation protected
Hi all! Thanks for taking the time to look into our GoFundMe.
We are looking to raise quite a large amount for an acheeva bed for Aydin. This is an absolutely amazing piece of kit which would benefit his life so much! A little bit below about Aydin and why we are so keen to get this piece of equipment for him…
Aydin is an absolutely amazing little 5 year old boy who has a genetic condition, GNAO1. Because of this he suffers with uncontrollable epilepsy, dystonia and global developmental delay. He has other conditions too such as scoliosis. He suffers with GORD severely and he is fed via a peg-j as can’t have anything orally. He is catheterised intermittently due to retaining for up to 20-22 hours some days. He has dyskinetic cerebral palsy as a result of cerebral damage after 2 episodes of sepsis/septic shock in 2021. He has no control of his movements and is unable to sit/stand unsupported. He is registered severely sight impaired - blind, due to the pathway to the brain. He suffers with recurrent chest infections and has nocturnal hyperventilation and mild hypoxemia, requiring intermittent oxygen therapy. He has to have a huge amount of medications (23 daily medications up to 4x a day, 6 rescue medications and 2 creams) not including oxygen and nebulisers and regular use of antibiotics for infections.
Aydin has just completed his first year (reception) at the most amazing school! He was unable to make it to nursery due to always being so poorly. At school Aydin is lucky to have the use of an acheeva bed, and at the hospice he attends regularly too. This bed is amazing for providing, comfort, safety, posture support and inclusion. At home he spends so much time on his nap mat on the floor because sitting can be so uncomfortable for him. He’s most happy when lay down. But family and carers find it really hard to spend so much time on the floor with him. It’s not a great place to spend so much of your time because it’s hard and cold and not very appealing to our backs and knees when entertaining him or tending to his medical needs. The comfort and support of this bed aides much support with things like his scoliosis with the positioning equipment, his chest with being able to lay down but be reclined still, pressure sores with being able to change recline settings and most of all, inclusion due to being able to change the height he’s at to be at our level. This also makes changing him and tending to his medical needs easier for us. OT have arranged for us to loan an acheeva bed to see how beneficial it is at home for him. Funding for one is highly unlikely as he already has a bed through them. When symmetrikit delivered the acheeva, we asked for a rough quote (will be obtaining an official quote and will post it here) and was told we would be looking at around £6500. That is for a full size acheeva bed which is only slightly more expensive, but would last Aydin for as long as he needs it, so no need to ever have to buy another! Just yearly services due the mechanics. We plan to try and raise as much as possible with a fun day, a sponsored sky dive, a sponsored silence (held by lovely friends) and anything else our amazing family and friends come up with. We absolutely, massively appreciate any sponsors and donations received and would love for you to follow updates here and also on Aydins Facebook update page (Amazin’ Aydin). Please follow, share and help us achieve funding Aydins Acheeva bed!
Thank you! Lorraine (Aydins mum)
Aydin is an absolutely amazing little 5 year old boy who has a genetic condition, GNAO1. Because of this he suffers with uncontrollable epilepsy, dystonia and global developmental delay. He has other conditions too such as scoliosis. He suffers with GORD severely and he is fed via a peg-j as can’t have anything orally. He is catheterised intermittently due to retaining for up to 20-22 hours some days. He has dyskinetic cerebral palsy as a result of cerebral damage after 2 episodes of sepsis/septic shock in 2021. He has no control of his movements and is unable to sit/stand unsupported. He is registered severely sight impaired - blind, due to the pathway to the brain. He suffers with recurrent chest infections and has nocturnal hyperventilation and mild hypoxemia, requiring intermittent oxygen therapy. He has to have a huge amount of medications (23 daily medications up to 4x a day, 6 rescue medications and 2 creams) not including oxygen and nebulisers and regular use of antibiotics for infections.
Aydin has just completed his first year (reception) at the most amazing school! He was unable to make it to nursery due to always being so poorly. At school Aydin is lucky to have the use of an acheeva bed, and at the hospice he attends regularly too. This bed is amazing for providing, comfort, safety, posture support and inclusion. At home he spends so much time on his nap mat on the floor because sitting can be so uncomfortable for him. He’s most happy when lay down. But family and carers find it really hard to spend so much time on the floor with him. It’s not a great place to spend so much of your time because it’s hard and cold and not very appealing to our backs and knees when entertaining him or tending to his medical needs. The comfort and support of this bed aides much support with things like his scoliosis with the positioning equipment, his chest with being able to lay down but be reclined still, pressure sores with being able to change recline settings and most of all, inclusion due to being able to change the height he’s at to be at our level. This also makes changing him and tending to his medical needs easier for us. OT have arranged for us to loan an acheeva bed to see how beneficial it is at home for him. Funding for one is highly unlikely as he already has a bed through them. When symmetrikit delivered the acheeva, we asked for a rough quote (will be obtaining an official quote and will post it here) and was told we would be looking at around £6500. That is for a full size acheeva bed which is only slightly more expensive, but would last Aydin for as long as he needs it, so no need to ever have to buy another! Just yearly services due the mechanics. We plan to try and raise as much as possible with a fun day, a sponsored sky dive, a sponsored silence (held by lovely friends) and anything else our amazing family and friends come up with. We absolutely, massively appreciate any sponsors and donations received and would love for you to follow updates here and also on Aydins Facebook update page (Amazin’ Aydin). Please follow, share and help us achieve funding Aydins Acheeva bed!
Thank you! Lorraine (Aydins mum)
Organizer
Lorraine Hussain
Organizer