The Amelia Forster Fund
Donation protected
https://www.gofundme.com/the-amelia-forster-fund https://www.gofundme.com/the-amelia-forster-fund
Thank you for supporting The Amelia Forster Fund
Heartbreakingly, Amelia was diagnosed with LINCL (Batten Disease) in September 2016 at the age of 4 1/2. The condition presented itself when Amelia was 3 1/2 years old with recurrent, intense seizures. Up until this age Amelia appeared to be a healthy, strong little girl full of mischief!
Batten Disease is an extremely rare neuro degenerative condition of which there is currently no cure. Over a short period of time Amelia lost the ability to walk, crawl, talk, swallow, and see. She is now fully immobile, suffering from dementia and requires 24 hour care. Devastating life expectancy is only between the ages of 6 - 12.
When Amelia was diagnosed it was a huge shock to find out even that anything like this existed, nevermind for our beautiful Amelia to have such a cruel disease. Obviously the struggles we face on a daily basis are a mixture of emotional, physical and financial.
We didn't think we would need to go down the route of fundraising, as we've always been private people and provided our children with what they need. However, 6 months after diagnosis, in March / April 2017 it became clear what Amelia was requiring and how expensive the equipment is and that not everything would be provided through the NHS.
Amelia could no longer sit comfortably in a car seat in our family car. She became very upset and agitated at being transported for even a very short journey. She got a specialist pushchair which could not fit in the car so we struggled to use this on a daily basis. The fundraising started, and we were amazed at how many people and the amount donated. It was huge! We were able to use some of this money to go towards getting a wheelchair accessible vehicle. This gave Amelia comfort immediately, she has been happy in the car ever since. It has given us the freedom as a family to travel a bit further and enjoy different things.
Your support also helped us buy Amelia a Ppod (costing a whopping £2000 ) This is her main chair at home as she struggles to sit in the chair the NHS provided.
We have had to have our home adapted so Amelia could have a bedroom and bathroom on the ground floor, and wheelchair accessible front door and internal doors. We contributed approx £10000 towards this. Without your donations, we would be in a lot of debt and having a lot of financial worries!
The NHS would only provide a shower in a wet room for Amelia. Having been in contact with The BDFA, they informed us that showers for children with Batten Disease can trigger seizures and can also cause pain (to do with sudden changes in temperature). So we fought and were able to purchase a sensory bath for Amelia which she loves!!
Some of the funds from organised events have helped to raise a lot of money to be donated directly to the BDFA who are fighting for early diagnosis and better treatments and hopefully one day a cure of this horrendously cruel condition. We have and are receiving a lot of support / advice from them too.
We put the last of the money raised towards a hot tub for Amelia - her favourite thing is being in the water! The hot tub helps to relax her tight muscles and allows her to be stretched and cuddled in ways we could no longer do otherwise
Amelia's needs will continue to change and as they do we need to be prepared for anything. In our experience, the new equipment is required as soon as the need presents itself which can happen fast.
Thank you for reading
Love the Forster family ❤️
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
We would like to say a massive Thank You to each and every person who has supported us, donated, joined in the endless amount of activities, runs, bike rides, bungee jump, waxes, disco, baked cakes, snooker tournament, tombolas, hair chops, and the list goes on!! We are overwhelmed with the amount of kindness and generosity we have received. Thank you
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Thank you for supporting The Amelia Forster Fund
Heartbreakingly, Amelia was diagnosed with LINCL (Batten Disease) in September 2016 at the age of 4 1/2. The condition presented itself when Amelia was 3 1/2 years old with recurrent, intense seizures. Up until this age Amelia appeared to be a healthy, strong little girl full of mischief!
Batten Disease is an extremely rare neuro degenerative condition of which there is currently no cure. Over a short period of time Amelia lost the ability to walk, crawl, talk, swallow, and see. She is now fully immobile, suffering from dementia and requires 24 hour care. Devastating life expectancy is only between the ages of 6 - 12.
When Amelia was diagnosed it was a huge shock to find out even that anything like this existed, nevermind for our beautiful Amelia to have such a cruel disease. Obviously the struggles we face on a daily basis are a mixture of emotional, physical and financial.
We didn't think we would need to go down the route of fundraising, as we've always been private people and provided our children with what they need. However, 6 months after diagnosis, in March / April 2017 it became clear what Amelia was requiring and how expensive the equipment is and that not everything would be provided through the NHS.
Amelia could no longer sit comfortably in a car seat in our family car. She became very upset and agitated at being transported for even a very short journey. She got a specialist pushchair which could not fit in the car so we struggled to use this on a daily basis. The fundraising started, and we were amazed at how many people and the amount donated. It was huge! We were able to use some of this money to go towards getting a wheelchair accessible vehicle. This gave Amelia comfort immediately, she has been happy in the car ever since. It has given us the freedom as a family to travel a bit further and enjoy different things.
Your support also helped us buy Amelia a Ppod (costing a whopping £2000 ) This is her main chair at home as she struggles to sit in the chair the NHS provided.
We have had to have our home adapted so Amelia could have a bedroom and bathroom on the ground floor, and wheelchair accessible front door and internal doors. We contributed approx £10000 towards this. Without your donations, we would be in a lot of debt and having a lot of financial worries!
The NHS would only provide a shower in a wet room for Amelia. Having been in contact with The BDFA, they informed us that showers for children with Batten Disease can trigger seizures and can also cause pain (to do with sudden changes in temperature). So we fought and were able to purchase a sensory bath for Amelia which she loves!!
Some of the funds from organised events have helped to raise a lot of money to be donated directly to the BDFA who are fighting for early diagnosis and better treatments and hopefully one day a cure of this horrendously cruel condition. We have and are receiving a lot of support / advice from them too.
We put the last of the money raised towards a hot tub for Amelia - her favourite thing is being in the water! The hot tub helps to relax her tight muscles and allows her to be stretched and cuddled in ways we could no longer do otherwise
Amelia's needs will continue to change and as they do we need to be prepared for anything. In our experience, the new equipment is required as soon as the need presents itself which can happen fast.
Thank you for reading
Love the Forster family ❤️
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
We would like to say a massive Thank You to each and every person who has supported us, donated, joined in the endless amount of activities, runs, bike rides, bungee jump, waxes, disco, baked cakes, snooker tournament, tombolas, hair chops, and the list goes on!! We are overwhelmed with the amount of kindness and generosity we have received. Thank you
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Organizer
Jane Langford
Organizer
