Rally for Romeo-New Legs & New Life
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.
When Judy approached us from JAM2000 regarding Romeo being part of a "Call the midwife" story line about the use of Thalidomide prescribed to pregnant woman in the 1950's and the devastating effects it had on some of their unborn babies, we thought - Why not, what an amazing opportunity this is for him! Life is very different now as it would of been for all those families in the 1950/60's.
This story line is more about them than our gorgeous little boy but we can relate to some of the hardships, although life is very much easier for people with disabilities today!!
So proud of you Romeo!!
What a heart rending story line, a real life experience for some in the 1950/60's.
You are only 5 years old and already doing your bit for the minority like yourself!!
Be proud to be a little bit different!!!
Two years today since the day you were taken ill!
I'm not one for dates but this one is etched in my brain.
So much has happened in this small amount of time.
I couldn't be more proud of you, Seren and Dad in the way you have coped and adapted. Our family and friends (some of you complete strangers, until now) have been on this journey with us too, so it's not been lonely. Thank you!!
Of course, there are times when you say you wish you had your "old legs" but we focus on what we do have and talk about what others are going through at this time. This takes about 25 seconds as you are onto the next conversation, such as "What's for tea?".
I no longer cringe for you when others stare (which is often, in unfamiliar places). I think - I know, isn't my son amazing, handsome and totally inspirational!!
I need to work on this with your sister though, as I caught her pulling a face at someone looking at you the other day! You might argue like cat and dog but she's got your back, like I know, you will have hers. ❤️
The £10 donation in the name of Jo is on behalf of Erin Church still rallying and just completed New Years Day swim! Freezing cold but proud she did it & raised money for our little hero! xxx
Oh dear, sorry folks, slightly over eager re the last donation! Fabulous amount raised by the kids but quick glance made me think it was closer than it was to £40,000! Sorry if caused confusion - no-one can accuse me of no enthusiasm!!!
God bless you all yeeaahh to infinity and beyond............. Xxxxxx
A personal message from Kate and Jon ....... Oh my goodness me!! Wow you’ve all been busy!!! Jon and I just had to contact each and every one of you to say the biggest "thank you" possible. We follow Go Fund Me and Facebook every night once Romeo is asleep and we have not only been overwhelmed by all your kindness, support, participation and generosity – but it has been a Godsend to us as a family in giving us strength. Words cannot possibly express our overwhelming sense of gratitude to each and every one of you. We’d like to say “thank you” to our wonderful family who have been incredible – we would not get through this time without you! To our friends - we are blessed to have you in our lives. Thank you to our work colleagues and local communities for all your support. There are those of you where our paths cross occasionally but we will be forever grateful and there are people who don’t even know us from Wales, the UK and from far and wide that have shown their support in so, so many ways – thank you all. We are truly humbled by what people have done and Romeo is a very lucky little man (as we are) to have you all on this journey with us. Lastly but certainly by no means least, we must say a special “thank you” to the lady who has set up this fund. Leanne, you have been a very special friend, one who is beautiful both inside and out. We have known Leanne for as long as we can remember - we have been through so many trials and tribulations in life but my God we have outweighed them by bellyfuls of laughter – we have always felt our glasses are half full not empty! You have for once left us speechless so all we can say is thanks and we love you. Romeo has been through more in his short 3 and a half years than Jon and I in 43 years combined. However to prove what a brave little fighter he is, the only concern he has is “will I get a wristband?” Romeo is doing really well and continues to improve – he’s had his skin grafts so there’s light at the end of the tunnel for coming home. In a nutshell our glass is indeed full to the brim and our two gorgeous children are blessed to have you all in their lives. Romeo will achieve many great things in his life – his journey will indeed go to infinity and beyond!! When we are back to some kind of normal we are going to throw a massive thank you party for all so that you can join me and Jon for a well-deserved drink!
Thank you Shelly Linborne for donating her mum's Fiat Multipla to Romeo and his family. This incredible gesture is even more special as sadly Shelly's mum, Maxine Kavanagh, recently passed away. Shelly said she knows her mum would be so pleased to know its being put to such good use by a family who needs it. The car is designed to hold a wheelchair so will be ideal for Romeo. Kate and Jon are simply overwhelmed and like me, humbled by how kind people are even though they are going through difficult times themselves. Thank you also to Lisa Manley for putting us in touch with each other xx
Happy mothers day katie hope you had a lovly day all our love linda &edwin
Just like to say Fantastic. Job your all doing keep up the great work every one xxxxx
Thinking of you all everyday & hope to see you soon xxx
Please read this amazing story . . . . . .
Hi Kate sweet dreams honey see you soon big huggs xxxx
With you all the way Romeo and family ,and a massive thankyou to leanne and debbie for all there. Hard work see you soon xxxxxx
Wow , you people are amazing :) Congratulations supporters for reaching the target!!! . Lots of Love to you Katie, Jon, Romeo and Seren xxxxxx
What a fantastic night Friday was - a massive thank you to Bernard and Dai for organising this fab family event to fundraise for Romeo... and what a success it was! Wow!! It was great to catch with friends both old and new. Thank you Romeo's Angels and to everyone who gave up their time, donated raffle prizes and came along and generously supported the event xx
It's Amazing how kind and generous everyone has been to sweet little Romeo lets all keep it up he needs our help xx
Its wonderful to see the support and love shown for this lovely family. Love to you all, stay strong. XXXXXXXXXX
We want to thank everyone for their continued support for a beautiful boy..Thank you everyone.x
Massive hugs sent to you Romeo, mum dad and seren wishing you all the best lots of love always linda and edwin xxxxx
Wishing you strength and all the luck in the world, glad he is recovering
Romeo is our nephew and we can't put into words how proud we are of him and his mummy daddy and his sister..
what a beautiful little boy and still smiling after all his been through, I don't know Romeo or his family but this story has brought my to tears several times, I check back every few days to see how far off the 25K target he is. please donate if you can. Much love to Romeo xxx