Ronnie’s Dream Holiday

Hi everyone, my names Chantelle and I’m a mum of 4 one of them being my amazing brave boy Ronnie. This is quite a lengthy explanation but thought I’d go back to the start…

I wanna say the beginning of march 2024 ronnie starting acting very out of character clingy and everything was stressing him out I put it down to maybe he was coming down with something. Few days later we took a trip to the gp as he wasn’t no better and had a few other symptoms to which I got told most probably viral go home give calpol he will be fine. 2 weeks later I noticed a yellow tinge to his eyes and skin color so back to the doctors we went, they said he’s a little jaundice but still nothing to worry about.

He was still playing as normal but still not completely him self but we had been back & forth the doctors a lot to which they were still saying he was fine so there wasn’t much else I could do.

Fast forward to the 17th of April we was at home he had stopped playing and laid next to me he was limp, floppy & unresponsive so I rushed him to A&E they took bloods & started him on fluids. By the time the bloods came back they had already arranged blue light transfer to a different hospital as he’s hemoglobin & platelets were dangerously low. When we arrived at pembury we got sent to HDU they was rushing around taking more bloods arranging transfusions and starting him on he’s second bag of fluids. They took a lot of blood from him and sent them to London, the royal marsden, Evelina etc to test for a lot of things that could be causing all of he’s symptoms. In the mean time waiting for these results to come back Ronnie had 6 blood transfusions, 4 ivig transfusions and multiple blood tests, ct scans, ultrasounds and much more. He then got he’s diagnosis late last year of Evan’s syndrome & AIHA. These are both autoimmune conditions that cause the immune systems to attack healthy red cells, white cells and platelets. He had 8 months of intense steroid therapy and due to that ended up with pediatric hypertension and Cushing’s syndrome, he gained over 10kg in 6 months this then put strain on he’s heart and lungs and for a 3 year old that’s to much to quickly. He struggled with walking, getting out of bed, playing and doing normal things that 3 year olds do. So that brings me to where we are now, in 11 months he’s received 10 blood transfusions, 7 ivig transfusions, he takes a lot of medication daily to keep him functioning and to try and prevent his body crashing. He’s been in intensive care twice, he’s now got a heart condition that has been caused by the severity of he’s anemia and everyday for him is a struggle he has blood tests every other day, blood pressure monitoring by a community nurse that comes to our home as well as trips to the evelina every 2-4 weeks. In the process of all this He’s completely lost he’s character and it’s impacted he’s quality of life so much

After a lot of family and friends asking me to set this up for him I thought I’d give it ago. One of Ronnie’s wishes is when he’s well enough he wants to go on an airplane or to Disney land but to do that we need travel insurance which for him works out more than the holiday in it’s self and as a mum of 4 under 5 it’s nearly impossible for me to pay for it all. This little boy deserves the world for he’s bravery and rewarding for everything he’s faced and things hes missed out of from the age of 3. I would give my life to see his face light up & watch him experience something other than the 4 walls of a hospital room☹️

All money raised will go towards Ronnie going on hes dream holiday to Disney & on an airplane for the first time

Thank you all for taking the time to read Ronnie’s story I appreciate every single one of you