Fionnuala's new space
Donation protected
About us
We are Liam and Tracey, parents to Fionnuala who is nearly 14. She is funny, affectionate, sometimes cheeky. She loves music, books, being outside and playing. She is also severely physically and intellectually disabled. She has always been a determined and happy baby, little girl and now teenager. She developed epilepsy at 7 months old which is partially controlled by medication. In 2019 she had a PEG fitted to help with feeding as she was struggling to gain weight and thrive. In November 2020 Fionnuala underwent an eight hour operation to correct scoliosis. She has recovered well from this surgery thankfully and we are prouder of her now than ever.
Our story
When we were looking for a house to buy in 2003, we found what we hoped would be our forever home, a small old cottage in need of renovation with a big garden. When our wonderful daughter Fionnuala was born in 2007 with a rare neurological condition, we knew it was likely we would need to do some work to the house to make it more suitable as she grew. Her condition is called Dandy-Walker Syndrome and it can affect people in different ways, in Fionnuala's case, she has never been able to walk or stand without support, and she has a severe learning disability. Fionnuala generally was well and happy and started special school in 2013 which she loves. We talked about what we would need to do to make the house suitable for her into adulthood and started coming up with detailed ideas and visions.
In April 2017 Fionnuala became very sick with a severe gut infection which necessitated three hospitalisations and three months absence from school. In July 2017 Liam got a insect bite on his leg which caused cellulitis and led to three months off work. He returned to work on 2 October 2017 and on 7 October 2017 was involved in a collision with a car while cycling. His injuries, while not life threatening, have been life changing. Liam’s right leg was broken which required surgery. He still has a slight limp and has problems walking downstairs. He broke 6 ribs and was unconscious. Liam has been left with an acquired brain injury which has meant he can no longer undertake his previous line of work. He has tried a different occupation but this also proved very challenging and difficult with his brain injury. All of this has been very stressful on both of us and we have also had to cope with a big reduction in our income as Liam is no longer in paid employment. We were unable to even think about the work needed on the house let alone pay for it.
In early 2018 Fionnuala was diagnosed with scoliosis and in 2019 it became apparent that surgery was the only treatment option available. Owing to the inevitable delays caused by the pandemic, her surgery did not happen until November 2020. Thankfully it went well and she has been recovering well at home. The last four years have been something of a nightmare in many ways and because of changes in Fionnuala’s condition and resulting needs we are now in a house we love, but which doesn’t work for our daughter who will be living with us for many years to come. We need to make it work for her which will in turn ease a lot of stress and strain on us.
As Fionnuala gets older and bigger her needs have changed and will likely continue to do so. Her disabilities mean she requires a fair amount of equipment which we do not have the space to store easily. Following her surgery for scoliosis she has been sleeping in what was the living room, with one of us sleeping in the room with her. In practical terms, this means that during the day we live in the kitchen. We have a temporary hoist which is fixed in the living room and cannot be used in the bathroom. Consequently all of Fionnuala’s personal care needs with the exception of showering are carried out in the one room. To give her a shower we have to bring her shower chair into the living room, hoist her into it, wheel her into the bathroom, shower her and then reverse the journey. This is not appropriate for Fionnuala’s dignity and not sustainable long-term.
What we want to do
We need to build on a single storey extension comprising of two bedrooms, a bathroom, hall and sensory room. One of the bedrooms would be Fionnuala’s room with full ceiling tracking hoist to adjacent bathroom. The hoist is vital as we are no longer able to lift and transfer her safely for showering. The other bedroom would be ours, as we prefer to be near to Fionnuala at night owing to the unstable nature of her epilepsy. Our plans also include a covered car port which would allow weather protected access to our adapted vehicle and a sensory room for Fionnuala’s stimulation and enjoyment.
Where we are up to
We have full planning permission from our local authority for the work to be done. We have been awarded the full local authority grant which is €30,000. We have decided to use all the savings we had which has added another €30,000 to the fund. Our architect and project manager has been amazing and has secured support from a number of local tradespeople and businesses, for which we are more grateful than we can say. BUT we still need to raise another €35,000 to get this project completed. Any donation you can make will help us to give Fionnuala her own space to be safe and happy as she moves into adulthood.
We are Liam and Tracey, parents to Fionnuala who is nearly 14. She is funny, affectionate, sometimes cheeky. She loves music, books, being outside and playing. She is also severely physically and intellectually disabled. She has always been a determined and happy baby, little girl and now teenager. She developed epilepsy at 7 months old which is partially controlled by medication. In 2019 she had a PEG fitted to help with feeding as she was struggling to gain weight and thrive. In November 2020 Fionnuala underwent an eight hour operation to correct scoliosis. She has recovered well from this surgery thankfully and we are prouder of her now than ever.
Our story
When we were looking for a house to buy in 2003, we found what we hoped would be our forever home, a small old cottage in need of renovation with a big garden. When our wonderful daughter Fionnuala was born in 2007 with a rare neurological condition, we knew it was likely we would need to do some work to the house to make it more suitable as she grew. Her condition is called Dandy-Walker Syndrome and it can affect people in different ways, in Fionnuala's case, she has never been able to walk or stand without support, and she has a severe learning disability. Fionnuala generally was well and happy and started special school in 2013 which she loves. We talked about what we would need to do to make the house suitable for her into adulthood and started coming up with detailed ideas and visions.
In April 2017 Fionnuala became very sick with a severe gut infection which necessitated three hospitalisations and three months absence from school. In July 2017 Liam got a insect bite on his leg which caused cellulitis and led to three months off work. He returned to work on 2 October 2017 and on 7 October 2017 was involved in a collision with a car while cycling. His injuries, while not life threatening, have been life changing. Liam’s right leg was broken which required surgery. He still has a slight limp and has problems walking downstairs. He broke 6 ribs and was unconscious. Liam has been left with an acquired brain injury which has meant he can no longer undertake his previous line of work. He has tried a different occupation but this also proved very challenging and difficult with his brain injury. All of this has been very stressful on both of us and we have also had to cope with a big reduction in our income as Liam is no longer in paid employment. We were unable to even think about the work needed on the house let alone pay for it.
In early 2018 Fionnuala was diagnosed with scoliosis and in 2019 it became apparent that surgery was the only treatment option available. Owing to the inevitable delays caused by the pandemic, her surgery did not happen until November 2020. Thankfully it went well and she has been recovering well at home. The last four years have been something of a nightmare in many ways and because of changes in Fionnuala’s condition and resulting needs we are now in a house we love, but which doesn’t work for our daughter who will be living with us for many years to come. We need to make it work for her which will in turn ease a lot of stress and strain on us.
As Fionnuala gets older and bigger her needs have changed and will likely continue to do so. Her disabilities mean she requires a fair amount of equipment which we do not have the space to store easily. Following her surgery for scoliosis she has been sleeping in what was the living room, with one of us sleeping in the room with her. In practical terms, this means that during the day we live in the kitchen. We have a temporary hoist which is fixed in the living room and cannot be used in the bathroom. Consequently all of Fionnuala’s personal care needs with the exception of showering are carried out in the one room. To give her a shower we have to bring her shower chair into the living room, hoist her into it, wheel her into the bathroom, shower her and then reverse the journey. This is not appropriate for Fionnuala’s dignity and not sustainable long-term.
What we want to do
We need to build on a single storey extension comprising of two bedrooms, a bathroom, hall and sensory room. One of the bedrooms would be Fionnuala’s room with full ceiling tracking hoist to adjacent bathroom. The hoist is vital as we are no longer able to lift and transfer her safely for showering. The other bedroom would be ours, as we prefer to be near to Fionnuala at night owing to the unstable nature of her epilepsy. Our plans also include a covered car port which would allow weather protected access to our adapted vehicle and a sensory room for Fionnuala’s stimulation and enjoyment.
Where we are up to
We have full planning permission from our local authority for the work to be done. We have been awarded the full local authority grant which is €30,000. We have decided to use all the savings we had which has added another €30,000 to the fund. Our architect and project manager has been amazing and has secured support from a number of local tradespeople and businesses, for which we are more grateful than we can say. BUT we still need to raise another €35,000 to get this project completed. Any donation you can make will help us to give Fionnuala her own space to be safe and happy as she moves into adulthood.
Organizer
Tracey Holsgrove
Organizer
County Meath
