Whilst out shopping at a local Ikea store, their healthy and lively 3-year-olds son Romeo complained of leg pain and on examining him his parents Johnathan and Katie , found purple blotches on both legs, which spread quickly.
They immediately took him to the local A&E hospital where Romeo deteriorated and became critically ill within hours and was admitted to the children's Intensive Care Unit at University Hospital of Wales.
Jon and Kate were given the devastating diagnosis that Romeo was suffering from an extremely rare and life threatening condition called PURPURA FULMINANS.
Romeo was placed on a respirator and sedated and his family were told to expect the worst, that every hour was crucial. Romeo was not expected to survive the night but the following morning he was still fighting for his life.
Little Romeo proved to be a little fighter but as the days went on his parents were told that his legs had been badly affected and in order to save them doctors would have to make incisions in them to relieve the pressure.
Sadly this procedure did not work and to save his life and to prevent the infection spreading, doctors said they would have to perform surgery to remove the infected areas, this meant they could not save his legs and needed to perform a double amputation on this tiny 3-year-old boy just above the knees. As soon as Romeo was stable enough the team of surgeons carried out the 10 hour operation.
However the damage was so great, two days later doctors had to carry out further surgery to remove more of Romeo's legs than they had hoped. Due to the extent of the surgery Romeo also needed a Colostomy but it is hoped this will be reversed in time.
Romeo has had over 15 operations and visits to the theatre to remove infected areas, change dressings and other procedures and interventions.
Due to the complicated nature do PURPURA FULMINANS and the extensive type of specialist care needed, Romeo has been transferred to another Children's Hospital where he is receiving treatment for tissue replacement and skin grafting.
His Amazing parents have been at his side the entire time. This had meant that they are separated from their 9-year-old daughter during the week and is being looked after by family members.
On Sunday 25th January 2015 Romeo was taken off the ventilator and breathing for himself. He still has a long way to go and lots more surgery and rehabilitation for years to come but he's alive and needs our help.
The family have been informed that prosthetic limbs may be an option although this is not guaranteed given the extent of the surgery. Romeo will need a wheelchair and hopefully prosthetics legs but both are very costly and will need replacing regularly as he grows. New developments in science may also provide options for Romeo but these will be extremely expensive.
These catastrophic events have been life changing not only for Romeo but also for Katie, Jon and Seren. Their lives have changed forever in terms of their home,their careers and their lifestyles.
This story is even more touching as this loving family adopted this gorgeous little boy in order to give him a "forever family". For those of you that don't know the family, Kate and Jon adopted Romeo in December 2013 when he was only 2-years-old and he was a long awaited precious son and brother to Seren - so it has been utterly devastating for them all but they are incredibly grateful that Romeo has been strong enough to survive this illness and is here to tell the tale.
This is fundraising account that I have sent up for the family as I have know them for over 30 years and this is a central port for anybody to donate or do a fundraising event themselves and put their proceeds through this site. Let's help this devoted family to continue to give this precious little boy a full and good life.
All monies donated will go towards Romeo's new wheels and legs and a new life for him and his family.
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