Weʼre raising £5,000 to help fund medical equipment, treatment and hopefully a diagnosis!
- United Kingdom
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I’m a little boy called Levi-Jett
I’m 2 years old and weigh 17lbs
I’m 75cm tall!
And Im a superhero!
I am undiagnosed and it’s thought that I have multiple very rare genetic conditions.
I will start with my physical condition of arthrogryposis. I have joint contractures affecting both my shoulders meaning I cannot lift my arms above my head. My jaw is contracted and I have a 1cm opening, My elbows don’t bend properly and my mummy and daddy struggle to get my arms into clothes. My wrists are flexed and ulnar deviated and my fingers are straight and do not bend and I have no knuckles so I struggle to play with my toys and I cannot grip things.
My hips are too tight and don’t move properly, my knees are flexed and will not straighten. And my spine has decided to start to bend too. I also have complex club foot that keeps regressing!
I also have long qt and sleep apnea meaning I sometimes forget I need to breath and sometimes my heart decides it wants to beat far to fast or far to slow.
I have ongoing pyrexias and can not regulate my body temperature. I have a high narrow palate, unsafe swallow due to aspiration and choking. I am fed through a button straight into my belly for upto 19.5hrs a day! I have absent seizures and take medication to try and lessen them. I have laryngomalacia causing my breathing to be noisy because I have a narrow floppy airway. My breathing makes horrible noises especially overnight a wheezy grunt is how the doctor described it, so I take medication to help with this and I have inhalers to help too.
Despite far too many calories going into my little body, I do not grow and haven’t gained weight in about 18months!
I have lots of thick secretions and thick mucus to my lungs and upper airways and I’m not strong enough to cough them up so we do lots of Physio to loosen it also and then use my suction machine to clear it all but it all builds back up very fast. I have frequent chestiness and my chests is compromised so I take antibiotics 4x a day to try and keep the infections away. They think it could be cystic fibrosis.
I have severe GERD to which I had a fundoplication to try and stop the reflux because I was aspirating on it and couldn’t gain weight. But I still don’t gain weight and now I wretch and gag all day long l, even with medication to try and stop it the drs say this is common in children with a neurological impairment and I CAN still be sick, I do take medication to try and help with this too. They think it could be a manifestation of sandifer syndrome. I also have constipation/diarrhoea and it’s never normal, it’s always mucusy. I take medication for this too.
I have hypotonia and am very weak, I cannot sit unsupported for very long and I cannot weight bare. I don’t feel things like I should in my legs either.
I have tremors, which I know are happening but I can’t stop them and they are very scary.
I am developmentally delayed and I say very few words. They say I’m neurologically impaired too but don’t know why. I’m awaiting appointments with lots of new specialists and hopefully they will find my diagnoses!
I’m up and down all the time and feel poorly, weak and fatigue very often. I don’t sleep well at all and am constantly wiggling and crying as I can’t say what’s wrong.
My family set up my Facebook group to follow my journey! A journey where we don’t know what’s going to happen, we have no prognosis and it’s all so unknown. It’s scary and we all want answers. So I can hopefully get treatment to help me.
LEVI-JETTS JOURNEY has been a success so far I’m raising awareness of being undiagnosed and lots of kind people have donated money so I can have new equipment to help keep me safe, keep me supported and in a better position and to give me more independence. I’m enjoying having my new equipment... I love being able to sit in the bath with my brother and play in the water. I love to be able to sit at the table and play with my toys, I love to go to the shop in my scoot, I love my brother pushing me in my scoot inside, I enjoy using my scoot myself but I’m often too tired and even when I’m not it wears me out quickly. My sats monitor is the best as I often go blue around my mouth and I have a horrible Grey tinge to my skin (cyanosis) but sometimes my oxygen levels aren’t too low or they are low but return to normal shortly afterwards, without my monitor At home I would have to go to the hospital even more regularly. And mummy says there is more to come too.. my new pushchair and my new power chair!
I still need more equipment to make things easier for me, to help me, help keep me safe and to help me develop! And we are going to take an aeroplane to see new doctors IF we don’t get answers here. I’m starting to get poorly more and more often again so we need answers! Please donate and help make my world a better place.
I am a tiny superhero fighting big battles and I continue to exceed expectations... i will not let all my symptoms/ difficulties get in my way, I may not do things the same as others but I do things my way!
I have been through more in my short life than most go through in their entire lives BUT i still continue to smile, don’t let my smile deceive you. I have good day and bad days but I still suffer on my good days just not as much as on the bad ones.
The target is a moving target dependent on what happens with getting my diagnosis here in the uk!
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- 6 months ago
Levi Jett6 months ago
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