Lillie's Innowalk Fund
Donation protected
Lillie Grace Scott was born ten weeks early on 15 July 2011 weighing 3lb 14oz. She spent nine weeks on the Neonatal Unit before being allowed to come home. She came home requiring all feeds through an ng tube down her nose as she had swallowing difficulties.
From December 2011 to July 2012 Lillie had aspiration pneumonia a number of times. This was caused by her severe reflux entering her lungs. The longest period we spent at home was three weeks.
On 20 July 2012, just five days after her first birthday, Lillie had a life saving operation called a nissen funduplication. This stopped her reflux. She also had a gastrostomy to fit a peg tube for feeding directly into her stomach.
In January 2013 Lillie was diagnosed with quadriplegic spastic and athetoid cerebral palsy. She also has chronic lung disease of prematurity and is colonised with pseudamonus. Her condition affects all four limbs as well as her trunk. She cannot sit, crawl, walk, talk or swallow. She doesn't have much control over arms and suffers unwanted movements.
We needed to raise £6800 to buy Lillie an Eye Gaze. This is a special computer which will enable her to play games independently. Lillie cannot play with toys on her own and this is very frustrating for her. The Eye Gaze is powered completely by the users eyes. Lillie has full control over her eyes so this is perfect for her.
The Eye Gaze can also be used as a communication device much like the one Stephen Hawkins has. So for the first time in her life Lillie will be able to learn to talk to us.
In the future she will be able to use the Eye Gaze to do her school work and even to use the internet.
Unfortunately our local authority do not fund this kind of equipment or even offer help to fund. We had to raise the entire £6800 ourselves.
Please take the time to visit Lillie's facebook page too. There are videos showing how the Eye Gaze works as well as videos showing Lillie using the Eye Gaze at the Gem Centre.
UPDATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
After lillies story appeared in the express and star an anonymous donor came forward with the £3800 to complete the fund.
BUT we also need a special piece of equipment called the innowalk. This will help improve Lillie's head control, reduce spasticity in her legs which will in turn reduce pain she experiences when her hamstrings are stretched. It can also improve digestion, sleep pattern, breathing, heart rate, etc.
As with any equipment needed Walsall Council will not fund even though it will save them a lot of money in the future as hopefully she won't need Botox or regular operations on her legs if she is using this regularly.
We have received a rough quote for this machine based on the support Lillie needs which is £11000. We have been given the details of a couple of charities to contact to see if they can help. In the meantime we will carry on with the auctions, etc in the run up to Christmas then we will plan events in the new year.
UPDATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Lillie needs a new car seat. Due to her special needs it has to be a special car seat namely a carrot from JCM. She has been assessed for this seat and we have received the quote which is £2137 which has to be funded ourselves. We are also hoping to buy Lillie a specialist trike. She has had an assessment for one with full support and splints for her legs. She absolutely loved being pulled round on it and cried when the assessment was over! We have received the quote for this from Quest88 which is £1285. Again this has to be funded by ourselves. Nether authorities do not help fund these types of equipment.
UPDATE!!!!!!!!!!!
Thanks to the help of Punjabi Wolves Lillie has her car seat & trike. She lives them. Thank you so much!
We are currently fundraising £5000 for hoists to lift Lillie as mom is under going physio for her back. But her facet joints are now damaged by the lifting and will never recover fully.
Thank you to everyone for your amazing support.
Lillie's facebook page is www.facebook.com/lillieseyegazefund . Please give us a like and a share. Remember, sharing is caring!
Thank you
xxx
From December 2011 to July 2012 Lillie had aspiration pneumonia a number of times. This was caused by her severe reflux entering her lungs. The longest period we spent at home was three weeks.
On 20 July 2012, just five days after her first birthday, Lillie had a life saving operation called a nissen funduplication. This stopped her reflux. She also had a gastrostomy to fit a peg tube for feeding directly into her stomach.
In January 2013 Lillie was diagnosed with quadriplegic spastic and athetoid cerebral palsy. She also has chronic lung disease of prematurity and is colonised with pseudamonus. Her condition affects all four limbs as well as her trunk. She cannot sit, crawl, walk, talk or swallow. She doesn't have much control over arms and suffers unwanted movements.
We needed to raise £6800 to buy Lillie an Eye Gaze. This is a special computer which will enable her to play games independently. Lillie cannot play with toys on her own and this is very frustrating for her. The Eye Gaze is powered completely by the users eyes. Lillie has full control over her eyes so this is perfect for her.
The Eye Gaze can also be used as a communication device much like the one Stephen Hawkins has. So for the first time in her life Lillie will be able to learn to talk to us.
In the future she will be able to use the Eye Gaze to do her school work and even to use the internet.
Unfortunately our local authority do not fund this kind of equipment or even offer help to fund. We had to raise the entire £6800 ourselves.
Please take the time to visit Lillie's facebook page too. There are videos showing how the Eye Gaze works as well as videos showing Lillie using the Eye Gaze at the Gem Centre.
UPDATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
After lillies story appeared in the express and star an anonymous donor came forward with the £3800 to complete the fund.
BUT we also need a special piece of equipment called the innowalk. This will help improve Lillie's head control, reduce spasticity in her legs which will in turn reduce pain she experiences when her hamstrings are stretched. It can also improve digestion, sleep pattern, breathing, heart rate, etc.
As with any equipment needed Walsall Council will not fund even though it will save them a lot of money in the future as hopefully she won't need Botox or regular operations on her legs if she is using this regularly.
We have received a rough quote for this machine based on the support Lillie needs which is £11000. We have been given the details of a couple of charities to contact to see if they can help. In the meantime we will carry on with the auctions, etc in the run up to Christmas then we will plan events in the new year.
UPDATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Lillie needs a new car seat. Due to her special needs it has to be a special car seat namely a carrot from JCM. She has been assessed for this seat and we have received the quote which is £2137 which has to be funded ourselves. We are also hoping to buy Lillie a specialist trike. She has had an assessment for one with full support and splints for her legs. She absolutely loved being pulled round on it and cried when the assessment was over! We have received the quote for this from Quest88 which is £1285. Again this has to be funded by ourselves. Nether authorities do not help fund these types of equipment.
UPDATE!!!!!!!!!!!
Thanks to the help of Punjabi Wolves Lillie has her car seat & trike. She lives them. Thank you so much!
We are currently fundraising £5000 for hoists to lift Lillie as mom is under going physio for her back. But her facet joints are now damaged by the lifting and will never recover fully.
Thank you to everyone for your amazing support.
Lillie's facebook page is www.facebook.com/lillieseyegazefund . Please give us a like and a share. Remember, sharing is caring!
Thank you
xxx
Organizer
Kimberley Elizabeth Windsor
Organizer
