Get Little Levi Traveling Safely
Donation protected
I have tried everything in my power to not have to get to this point where I need to reach out and ask people to help me but I’ve gotten to the point where I need this sooner rather than later and I need everyone to help in any way they can, either by contributing or sharing if you are unable to.
As most of you know, Levi was diagnosed at around 2 years of age with mitochondrial disease. Recently I was told he has an incredibly rare gene mutation at the root of his condition ‘PNPT1’. I have managed to connect with 9 other families worldwide who have children with this condition. This was all after knowing from a tiny newborn that things were not quite right with Levi. At 3 months old he was hospitalized and tests were run to find out what was happening, but everything came back ‘normal’. It took a skin and muscle biopsy to find the mitochondrial disease which was extremely painful for Levi. I have spent endless hours crying for my child. He was in agony for a long time before anyone knew. He was having unnoticed seizures as he was falling asleep which made it hard for him to get to sleep.
Levi is unable to stand or walk, he’s unable to sit unassisted or even hold his head independently. He is wheelchair bound and mostly likely will be for the duration of his life. Levi relies on me, his mum, to do absolutely everything for him from being fed by a tube to being incontinent and in nappies. He is on 9 medications that he has 2-3 times a day, some are for epilepsy and the others are a cocktail of vitamins to boost energy levels. Levi tires easily and is unable to be pushed too hard in therapies even though he goes into a therapy session with so much determination and willingness to push himself he really falls flat after 40-45 minutes.
Levi is the sweetest boy I have ever met in my life. He has the most gorgeous smile and such an infectious laugh. He deserves the absolute best in life and I have always fought hard to make sure he gets it. He’s such a gentle soul with a little cheeky side. He loves with his whole self more than is humanly possible.
It is getting extremely taxing on my body to be lifting Levi in and out of his current car seat and lifting his 20+kg wheelchair into the boot of my car. Levi is currently 16kg and 106cm long. He is a tall boy and will only keep growing. He is incredibly floppy but also has a strong extensor pattern that will see him arching backwards strongly and I have to fight against this to get him into the car. I can’t do this forever. Eventually I just won’t be able to get him in the car. I still have him in a rear facing car seat as he just doesn’t have the head control to be forward facing safely. At the moment he still fits but not for much longer. He will need to go into a forward facing car seat that just won’t have the support he needs to sit correctly.
Early 2017 I pulled money out of my superannuation with the intention to buy a van and have it converted to a wheelchair van but unfortunately I didn’t do my research properly and NDIS will not fund the conversion of my current vehicle. Their guidelines specify that a vehicle needs to be under 3 years of age for them to pay for the modifications.
Shortly after I purchased this car I went through a major family breakdown and had no choice but to flee the home I lived in with my 2 boys. I won’t go into detail because I always end up in trouble for anything I say. My boys and I are now safely in our own home.
Unfortunately I decided not to return to work after having Levi as he is incredibly high needs and the risk of sending him to daycare and all the bugs he would be exposed to just was never an option for me. He needs one on one care full time and he would not receive that in mainstream child care, he could only receive the care he needed from myself. So now I rely on a carer pension to support myself and my 2 kids day to day. I am in no position to afford loan repayments nor would a bank look twice at me in my situation. I don’t have the capability to save the amount I need in the time frame I need it in. Every avenue I try adds more time to get to the end goal. I never wanted to be here in this position but right now I have no choice. Levi is lucky enough to be able to attend an amazing special needs school school that is equipped with trained nurses to administer his feeds and medication and he gets the support and care he needs. He is currently in kindergarten and attends 3 days a week. I need to be able to safely transport Levi to and from school and to get out in the community. Levi also has a lot of appointments I need to get him to, including specialists at Princess Margaret Hospital, hearing tests and adjustments to his hearing aids, doctor appointments when he is unwell and therapy sessions that are outside of the home.
Please help in any way you can, whether it be working with me to organize fundraisers, depositing a small amount towards this goal for Levi or just sharing this link with your friends.
Also head on over to his facebook page and give him a follow if you don’t already. He has loads of fun and I love sharing him with everyone.
Raising Levi
Please give my blog a read also which goes into detail of what it was like to go through all the emotions and heartache in learning about Levi’s condition.
A roller coaster of emotion
Thank you so much ❤️
As most of you know, Levi was diagnosed at around 2 years of age with mitochondrial disease. Recently I was told he has an incredibly rare gene mutation at the root of his condition ‘PNPT1’. I have managed to connect with 9 other families worldwide who have children with this condition. This was all after knowing from a tiny newborn that things were not quite right with Levi. At 3 months old he was hospitalized and tests were run to find out what was happening, but everything came back ‘normal’. It took a skin and muscle biopsy to find the mitochondrial disease which was extremely painful for Levi. I have spent endless hours crying for my child. He was in agony for a long time before anyone knew. He was having unnoticed seizures as he was falling asleep which made it hard for him to get to sleep.
Levi is unable to stand or walk, he’s unable to sit unassisted or even hold his head independently. He is wheelchair bound and mostly likely will be for the duration of his life. Levi relies on me, his mum, to do absolutely everything for him from being fed by a tube to being incontinent and in nappies. He is on 9 medications that he has 2-3 times a day, some are for epilepsy and the others are a cocktail of vitamins to boost energy levels. Levi tires easily and is unable to be pushed too hard in therapies even though he goes into a therapy session with so much determination and willingness to push himself he really falls flat after 40-45 minutes.
Levi is the sweetest boy I have ever met in my life. He has the most gorgeous smile and such an infectious laugh. He deserves the absolute best in life and I have always fought hard to make sure he gets it. He’s such a gentle soul with a little cheeky side. He loves with his whole self more than is humanly possible.
It is getting extremely taxing on my body to be lifting Levi in and out of his current car seat and lifting his 20+kg wheelchair into the boot of my car. Levi is currently 16kg and 106cm long. He is a tall boy and will only keep growing. He is incredibly floppy but also has a strong extensor pattern that will see him arching backwards strongly and I have to fight against this to get him into the car. I can’t do this forever. Eventually I just won’t be able to get him in the car. I still have him in a rear facing car seat as he just doesn’t have the head control to be forward facing safely. At the moment he still fits but not for much longer. He will need to go into a forward facing car seat that just won’t have the support he needs to sit correctly.
Early 2017 I pulled money out of my superannuation with the intention to buy a van and have it converted to a wheelchair van but unfortunately I didn’t do my research properly and NDIS will not fund the conversion of my current vehicle. Their guidelines specify that a vehicle needs to be under 3 years of age for them to pay for the modifications.
Shortly after I purchased this car I went through a major family breakdown and had no choice but to flee the home I lived in with my 2 boys. I won’t go into detail because I always end up in trouble for anything I say. My boys and I are now safely in our own home.
Unfortunately I decided not to return to work after having Levi as he is incredibly high needs and the risk of sending him to daycare and all the bugs he would be exposed to just was never an option for me. He needs one on one care full time and he would not receive that in mainstream child care, he could only receive the care he needed from myself. So now I rely on a carer pension to support myself and my 2 kids day to day. I am in no position to afford loan repayments nor would a bank look twice at me in my situation. I don’t have the capability to save the amount I need in the time frame I need it in. Every avenue I try adds more time to get to the end goal. I never wanted to be here in this position but right now I have no choice. Levi is lucky enough to be able to attend an amazing special needs school school that is equipped with trained nurses to administer his feeds and medication and he gets the support and care he needs. He is currently in kindergarten and attends 3 days a week. I need to be able to safely transport Levi to and from school and to get out in the community. Levi also has a lot of appointments I need to get him to, including specialists at Princess Margaret Hospital, hearing tests and adjustments to his hearing aids, doctor appointments when he is unwell and therapy sessions that are outside of the home.
Please help in any way you can, whether it be working with me to organize fundraisers, depositing a small amount towards this goal for Levi or just sharing this link with your friends.
Also head on over to his facebook page and give him a follow if you don’t already. He has loads of fun and I love sharing him with everyone.
Raising Levi
Please give my blog a read also which goes into detail of what it was like to go through all the emotions and heartache in learning about Levi’s condition.
A roller coaster of emotion
Thank you so much ❤️
Organizer
Anastasia Harrison
Organizer
Girrawheen WA
