NIKOLA & MILAN'S FUNDRAISER
Over the next 3 months 5% of all sales at www.romeoandmadden.com will go to help support two little boys that are very close to my heart.
Nikola and Milan are are only 5 and 2 years old, they are the sons of my best friend Fiona. They were born with an extremely rare condition named X-Linked Hyper Igm Syndrome. I will try and explain this as simply as possible. X-Linked Hyper IGM Syndrome affects the immune system, people with this condition have too many of one type of antibody, in healthy people this particular antibodies role is to switch into other types of antibodies as intruding foreign particles and germs present themselves, these antibodies are suppose to attach themselves to these intruders and mark them for destruction, in people with this condition this antibody doesn’t make the switch, so they have a whole lot of that antibody and none of the ones needed to destroy the specific germs. This means they can’t fight infections.
The treatment for this condition has been monthly ‘intragrams’, this is a transfusion of antibodies from healthy donors, so they get those antibodies that they lack. Nikola and Milan have had to travel to hospital 5 hours away to recieve this treatment, every month since they were born. This treatment is not a cure though and unfortunately people with this condition still get infections. Bacteria that normal healthy functioning people can fight off on their own or with medication is life threatening for people with this condition.
Fiona’s brother, Anthony, was also born with this condition and had monthly intragrams his entire life. Sadly, Anthony contracted Cryptosporidium, a parasite found in tap water. Because Anthony had X-Linked Hyper IGM Syndrome, his body could not fight this parasite and he became very ill and passed away from it a couple of years ago. He was only 29.
A bone marrow transplant is the only cure to this condition, however; it is not 100% successful. Fiona found out a year ago that Nikola and Milan’s brothers Luka (3 years old) and Novak (Milan’s 2 year old twin) were matching donors. This is a God send in itself, they are extremely lucky to have two sibling donors. Fiona knew this was now an option but something she thought she would have a long time to think about and maybe consider in the future as a last resort.
A few months ago Nikola’s regular blood tests showed the deadly Cryptosporidium in his body. As you can imagine this was horrifying news and decisions had to be made very quickly before this parasite started to affect Nikola, because once it did he would be too sick and a transplant would no longer be an option. Fiona had to make a decision very quickly and now both Nikola and Milan will go ahead and have the bone marrow transplants, a procedure that will try and cure them of this condition, but will put them through weeks of agonizing, heart breaking hell that no baby or child should have to go through. They will endure a treatment combined with chemotherapy to kill every cell in their little bodies, they will be very uncomfortable and extremely sick! They will then receive the bone marrow from their brothers, and beyond that is a terrifying waiting game, taking each day one at a time, praying that their bodies accept the bone marrow and start producing new healthy cells. There is a 95% chance that this procedure will be successful, but a lot of things could go wrong.
This is even scarier for Nikola because we are talking about killing the little immunity he has WHILE he has a deadly parasite in his body, it leaves him extremely vulnerable.
They each have a room of their own, in isolation, with only one family member allowed in there at a time. Each boy has to have someone with them 24 hours a day, so this will be time divided between Fiona, Vlad (the boy’s father) and Fiona’s parents. They will be in isolation for at least 6 weeks while their bodies hopefully produce new cells, they cannot come into contact with any germs in this time as they have absolutely no immune system. Everything they take in there with them has to be new and steralised. This includes clothes, toys, games, electronics, dvds and anything else they need to help them get through this.
While this is happening, everyone will be taking in turns staying at home in Bingara NSW (5 hours from Brisbane QLD) looking after the other two boys and Fiona’s eldest children Miki (13) and Angelina (12) while they go to school. Depending on the outcome of the transplant, it will be from 4-6 months before they will be home.
Once the Doctors are confident enough to release the boys, they will come back home to NSW where they will be still recovering and limited to what they can do and where they can go. This will take 12 months but they will not be officially considered ‘cured’ until two years after the transplant. The boys will not be able to go out into the general public and Nikola will not be able to start his first year of school (kindergarten) until at least half way through next year, and that’s only if his Doctor agrees it is safe to do so.
As you can imagine this is going to be an extremely anxious, scary and confusing time for Nikola and Milan, and for the whole family. I don’t know where Fiona finds the strength, maybe she doesn’t, she hasn’t been given a choice, but the whole thing is just so frightening that it is difficult to be excited about the outcome.
While Milan is so young and most likely oblivious to what he is about to go through, it is heartbreaking to think that he is going to be so sick. This is a little boy that my son calls ‘the laughing baby’ because he is just so happy and never stops laughing. You would never know that there was anything wrong with him.
Nikola is 5 and a half and understands to some degree what is wrong with him and what he will need to do go through to get better, but you need to understand that Nikola and Milan have no obvious signs of any illness, so it will be very confusing for them to have go through this when they don’t feel sick in the first place. Nikola is the gentlest little soul I have ever known, if you met him you would be blown away by how brave he is being. He has lived with this all his life and it is the norm for him, he goes to his appointments every month, has his transfusions, and never complains, he has spent so much time in hospitals in 5 years, yet you never hear him mention it, it’s no big deal to him.
For the last five years Fiona and Vlad and their children have spent so much time separated, between their home in Bingara and at the hospital in Brisbane. It has been so difficult for them financially, and they really have nothing left. Fiona is a hairdresser and Vlad is a painter, but with 2 boys needing to travel away to hospital every month, 2 of them had to go with the boys so they had a parent each for their separate appointments and someone had to stay at home with the other children, so it has been impossible for them to hold full time jobs, and now none of them can work at all until this is all over, including Fiona's mum.
The reason I am running this fundraiser is to raise much needed funds to support them over the next few months while the boys undergo chemotherapy and their transplants, and during their long road to recovery.
The funds raised will help support them immediately while they are in hospital with their travel, accomodation and daily living expenses. It will assist them with ongoing medical, travel and accomodation expenses over the next 12 months while the boys are recovering and waiting for the all clear. And it will help them pay their bills and keep up to date at home while they are unable to work. It will also help them buy the boys new toys and games that are safe enough to take into their rooms. AND If there is anything left over, i hope they are able to treat their children in some way, as way of saying thank you to Nikola and Milan for being so brave, and thank you to Luka and Novak for being little superheroes and helping to save their brothers lives, and to their older children Miki and Angelina for being so supportive and patient while their parents have had to be away from them for so long.
You can read updates on their progress and make donations here at Go Fund Me www.gofundme.com/bingaraboys