Jaxon is a bubbly, brilliantly happy and inquisitive almost two year old that has been through more than most in their entire life.
Jaxons is diagnosed with congenital cytomegalovirus which is believed to be the cause of two cysts in his brain, 1p36 deletion syndrome which is a rare chromosome deletion known to cause disabilities, severe hypertrophic obstructive cardiomyopathy and Barrters syndrome which causes electrolyte imbalances.
He spent the majority of his first year in hospital with poor weight gain, electrolyte imbalances, infections, feeding difficulties, tube feeds, dehydration and more. He had hundreds of blood tests, several lumbar punctures, numerous lines and two operations with multiple procedures.
Two of the operations were to place a feeding feeding tube in his stomach and small intestine as he suffered with reflux which could have him committing up to 50 times a day and night. His stomach only tolerated small amounts. During one of these operation he nearly lost his life as he arrested and needed cardiac massage, luckily we were in a cardiac centre for the operation due to the known risk with his hypertrophic cardiomyopathy.
Jaxon has come one leaps and bounds since getting out of hospital less than a month before his first birthday. It has not been without a huge amount of care but he has thrived being at home, exploring the outdoors and with early intervention teams.
When his mother attempted to return to work after his first birthday knowing the costs involved in raising a disabled child he was rejected from two nurseries out of fear of his conditions.
Almost a year later and with help of professional he has been welcomed with open arms to a preschool where he should start in September. His mother didn’t even know if he would make it to his first birthday and so this is a huge, huge milestone.
However, to attend Jaxon must have a suitable chair. Though he started to sit at 18months old his posture is poor and it can be tiring for him. For meal times especially Jaxon needs a specialist chair that will support his posture so that his stomach is not squashed which will cause vomiting and allow him to be comfortable. For Jaxon to get the most from the environment he needs to not be tired out doing activities that come so effortless to us. He needs to be supported.
After a lot of encouragement I have had to put my pride aside to ask for your support with this. He is supposed to start in 5 weeks and ordering the chair can take a considerable amount of time. I cannot find the funds myself as I am unemployable meeting his daily needs and a charity application though amazing could take more time and also take away from other families that don’t have the online support Jaxon does.
The latest quote was around £2400 but we are awaiting a quote for another chair so I have put the target at £3000 to give some room for a higher quote and also fees.
If we do hit the target and there is money left over this will be spent on other needs for Jaxon. This may go towards future equipment, services or activities that improve his quality of life.