New Path for Girl with Chromosome Microdeletion
Donation protected
So LiRi is the daughter of a friend of our team. A group of 13 friends (and one of their Dad's!) have created a new Lockdown Running Group and we are attempting to 'individually but together' run from Land's End to John O'Groats in 7 weeks. We did 216k last week - the equivalent of Land's End to Exeter and want to make a difference by raising some money along the way to help others and motivate us along the way!
Obviously, there are lots of people who need financial support at the moment but lots of children and especially those with SEN are missing their vital support of schools and freedom to exercise properly and LiRi is struggling to adapt to life within the compounds of her house and front drive, without the chance to use her walking frame on a hard surface. We want to help her Mum raise the money to make a permanent path around her garden to enable LiRi to push on and not be put back by lockdown. Please read LiRi's amazing Mum Jo's story below....
Sadly lock down is causing complete disarray to LiRi. She is missing her routine, her school life, being able to walk for "miles" around the school on its glossy floors with her walking frame. Something I simply cannot replicate at home.
The upheaval has caused her to self harm, head butting hard floors and biting her hands in distress.
These are hard times, but the alternative of sending LiRi into school and risking LiRi with the virus is not a consideration. She is more susceptive to illness. She has a chromosome microdelation (19p13.2), significant learning difficulties, along with visual impairment, epilepsy, a hole in her heart. Her low muscle tone means that getting over illness is a challenge at the best of times. She loves life generally and loves to travel around in her walking frame or on her trike, which she has recently learnt to steer.
Ordinarily LiRi would ride her trike as her means of transport (she is unable to walk unaided) on days out visiting national trust sites, river and woodland walks. We don't have these options at present. LiRi will need to socially isolate until an effective treatment has been found. This is going to be a long journey for her.
LiRi is usually a happy and content child. At the moment she cannot access our garden, as she isn't strong enough to pedal across the grass. The garden is a wonderful size to be able to put paths in (it used to be a small paddock) she makes do instead with the limited space on our driveway, which has its own dangers of her tipping her trike on its uneven surface. Prior to lock down we were able to go for walks with LiRi in her pushchair, but now we are unable to do this. I can't even replicate it around my garden as my wrists have become too weak (from caring for LiRi) to push the pushchair over the grass.
Of course, it's not just a case of enjoyment, LiRi needs the proprioceptive input into her sensory diet for her own wellbeing. She needs to move to function her digestive tract properly, something we are struggling with since she has lost access to places to visit. She needs access to smooth walking surfaces to develop her balancing skills, to build her muscle strength. To kick a ball about. To ride her trike and explore her own garden. To run with her walking frame. Any of those things that she loves she is massively limited to do at present and it breaks my heart to see how its impacts upon her mental health.
I am at a loss as to what to do to help my angel.
Paths would last her a lifetime and as I can't see her changing her needs from the desire to move be that under her own steam or mine, they would support and enable her for life.
But its not just that, its all of the things that she loves to do that she would be able to do with paths, at any time of the year, for all of her life. I just can't tell you enough how much of an impact on her life a simple path would be. Even with her walking frame, walking sticks and trike, if you haven't got a surface to use them they are useless.
Please help us if you can.
Lots of thanks and love,
LiRi's Lockdown Runners and LiRi's Mum Jo
xxxxx
Obviously, there are lots of people who need financial support at the moment but lots of children and especially those with SEN are missing their vital support of schools and freedom to exercise properly and LiRi is struggling to adapt to life within the compounds of her house and front drive, without the chance to use her walking frame on a hard surface. We want to help her Mum raise the money to make a permanent path around her garden to enable LiRi to push on and not be put back by lockdown. Please read LiRi's amazing Mum Jo's story below....
Sadly lock down is causing complete disarray to LiRi. She is missing her routine, her school life, being able to walk for "miles" around the school on its glossy floors with her walking frame. Something I simply cannot replicate at home.
The upheaval has caused her to self harm, head butting hard floors and biting her hands in distress.
These are hard times, but the alternative of sending LiRi into school and risking LiRi with the virus is not a consideration. She is more susceptive to illness. She has a chromosome microdelation (19p13.2), significant learning difficulties, along with visual impairment, epilepsy, a hole in her heart. Her low muscle tone means that getting over illness is a challenge at the best of times. She loves life generally and loves to travel around in her walking frame or on her trike, which she has recently learnt to steer.
Ordinarily LiRi would ride her trike as her means of transport (she is unable to walk unaided) on days out visiting national trust sites, river and woodland walks. We don't have these options at present. LiRi will need to socially isolate until an effective treatment has been found. This is going to be a long journey for her.
LiRi is usually a happy and content child. At the moment she cannot access our garden, as she isn't strong enough to pedal across the grass. The garden is a wonderful size to be able to put paths in (it used to be a small paddock) she makes do instead with the limited space on our driveway, which has its own dangers of her tipping her trike on its uneven surface. Prior to lock down we were able to go for walks with LiRi in her pushchair, but now we are unable to do this. I can't even replicate it around my garden as my wrists have become too weak (from caring for LiRi) to push the pushchair over the grass.
Of course, it's not just a case of enjoyment, LiRi needs the proprioceptive input into her sensory diet for her own wellbeing. She needs to move to function her digestive tract properly, something we are struggling with since she has lost access to places to visit. She needs access to smooth walking surfaces to develop her balancing skills, to build her muscle strength. To kick a ball about. To ride her trike and explore her own garden. To run with her walking frame. Any of those things that she loves she is massively limited to do at present and it breaks my heart to see how its impacts upon her mental health.
I am at a loss as to what to do to help my angel.
Paths would last her a lifetime and as I can't see her changing her needs from the desire to move be that under her own steam or mine, they would support and enable her for life.
But its not just that, its all of the things that she loves to do that she would be able to do with paths, at any time of the year, for all of her life. I just can't tell you enough how much of an impact on her life a simple path would be. Even with her walking frame, walking sticks and trike, if you haven't got a surface to use them they are useless.
Please help us if you can.
Lots of thanks and love,
LiRi's Lockdown Runners and LiRi's Mum Jo
xxxxx
Fundraising team: LiRi's Lockdown Runners (11)
Chris Husband
Organizer
England
Justin Taylor
Team member
Natalie Jones
Team member
Holly Husband
Team member
Neesha Taylor
Team member
