From the start Levi was a fighter! Whilst pregnant we were told to terminate as Levi wouldn't survive the pregnancy and even if he did he would die during the birth or shortly afterwards! Levi has been in and out off hospital since birth, daily life is a struggle with appointments and therapies. Levi has arthrogryposis (AMC) affecting his jaw, both shoulders, both elbows, both wrists, all fingers, both hips, both knees, all toes, bilateral tallipes, levis spine has also began to curve. Levi has had his tendons cut 3 times and has spent the majority of his life in casts for correction of his tallipes. Levi was ng fed until november 2016 when he had the peg and a fundoplication due to an unsafe suck-swallow-breathe coordination and aspiration. He Has severe reflux(queried sandifers syndrome). He has a narrow floppy airway and a narrow high palate. Levi has thick mucus to his lungs and upper airways, levi cannot clear it and we have to physio techniques to loosen it and a suction machine at home to clear it. he has excess secretions, a low immune system, frequent chest infections(queried cystic fibrosis) Levi has absence seizures, laryngomalacia and sleep apnea. Levi has constipation. It is thought he has a neurological condition(caudal regression is queried) Levi has no reflexes and he cannot weight bare and have recently been told his joints are too weak. Levi doesnt have an official diagnosis and testing is ongoing, genetics have found a couple of variations in his DNA but they have never been seen together so its all ongoing.

Levi is 2 on August 10th. He weighs 17lbs and has had no gain in over 13 months and he is 74cm long.

Some equipment isnt provided on the NHS, like powered mobility isnt available under the age of 5. Having a child with complex needs is expensive. We have applied to a charity for help with powered mobility, we are awaiting acceptance but they only fund upto 80% so we are asking for help with the rest, Levi also also needs specialist seating, a smaller chair for use in the home, and some other things including a portable oximeter machine and hopefully a specialist bed with an incline for his overnight feed.

We have set the target at £5000 depending on how things go with our charity application we may need to increase this. Thank you to anyone who helps us reach our target, no donation is too little! Please share Little Levis story and if you havent already please find levi-jetts journey group on facebook.